The Self-Help Support Group SouceBook, 9th Edition 2015-2016

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The Self-Help Group SourceBook Your Guide to National, International, Telephone and Online Support Groups IX Edition | 35th Anniversary Edition Compiled and edited by

Michael Adam Reale, Information Services Supervisor With special appreciation to the staff and volunteers of Self-Help Services, a department of Saint Clare’s Health System, a member of Catholic Health Initiatives.

Staff:

Aimee Braca-Deo, Program Administrator Wendy Rodenbaugh, Information and Referral Assistant Barbara White, State Program Coordinator Volunteers:

Barbara Blumenfield Pat de la Fuente Howard Learner

Baiba Ozols Dr. Paul Riddleberger, PhD Elaine Romito

In New Jersey: 1-800-FOR-MASH | Outside of NJ dial 973-989-1122 www.NJgroups.org

The New Jersey Self-Help Group Clearinghouse 375 E. McFarlan Street Dover, NJ 07801 MMXV – MMXVI June 3rd 2015

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ABUSE Child Abuse (Physical | Emotional) Sexual Abuse | Incest | Rape Spousal Abuse | Domestic Violence ADDICTIONS Alcohol Abuse Codependency | Dysfunctional Families Debt | Overspending Drug Abuse Gambling Gaming Addiction Internet Addiction Overweight | Food Addiction Sex | Love Addiction Smoking Cessation BEREAVEMENT Death of a Child | Fetal Loss General Bereavement Suicide Survivors Widows | Widowers DISABILITIES Amputation | Limb Deficiency Autism | Asperger Syndrome Blind | Visually Impaired Brain Injury | Brain Tumor | Coma Burn Survivors Cerebral Palsy Deaf | Hearing Impaired | Tinnitus | Meniere’s General Disabilities | Spinal Cord Injury Intellectual Disabilities | Down Syndrome Learning Disability | Attention Deficit Disorder Speech | Stuttering FAMILY | PARENTING Adoption Caregivers | Families Of Nursing Home Residents Cesarean Birth Childbirth | Breastfeeding Foster Parents | Children Marriage | Family Parenting | Grandparenting Parents of Children with Behavioral Problems Parents of Premature | High Risk Infants Parents | Siblings of Disabled | Ill Children Separation | Divorce Single Parenting Stepparenting 3

Twins & Triplets HEALTH Aarskog Syndrome Accident Victims Acid Maltase Deficiency | Pompe Disease Acidemia Acquired Immune Deficiency Syndrome | HIV Acromegaly Addison’s | Adrenal Disease Albinism Allergy Alopecia Areata ALS (Lou Gehrig’s Disease) | Primary Lateral Sclerosis Alveolar Capillary Dysplasia Alzheimer’s Disease | Dementia Amyloidosis Androgen Insensitivity Anemia Angelman Syndrome Ankylosing Spondylitis Anophthalmia Anorchidism Anosmia | Parosmia Antiphospholipid Antibody Syndrome Aphasia Apraxia Dyspraxia Arteriovenous Malformation Arthritis

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Arthrogryposis Ataxia Autoimmune Disorders Barth Syndrome Batten Disease Behcet’s Syndrome Benign Essential Blepharospasm Bladder Exstrophy Brachial Plexus Brain Aneurysm Brain Injury | Brain Tumor | Coma Breast Implant Support Cancer Cardio-Facio-Cutaneous Syndrome Cavernous Angiomas | Cavernous Malformation Celiac | Gluten Intolerance Cerebrocostomandibular Syndrome Charcot-Marie-Tooth Disease Charge Syndrome Chiari Malformation Chordoma (Rare Tumor) Chromosomal Anomalies Chronic Fatigue Syndrome Chronic Granulomatous Disease Chronic Pain Circumcision Cleft Palate | Cleft Lip Cloves Syndrome Cockayne Syndrome Coffin-Lowery Syndrome Congenital Adrenal Hyperplasia Congenital Central Hypoventilation Congenital Diaphragmatic Hernia Congenital Nevus Cornelia De Lange Corticobasal Ganglionic Degeneration Costello Syndrome Cowden Syndrome | BRRS Cushing’s Disease Cyclic Vomiting Cystic Fibrosis Cystinosis Dancing Eyes Syndrome Dentatorubral Pallidoluysian Atrophy Diabetes Dravet Syndrome 5

Dubowitz Syndrome Dysautonomia Dystonia Dystrophic Epidermolysis Bullosa Eating Disorders Ectodermal Dysplasias Eczema Ehlers-Danlos Syndrome Encephalitis Endometriosis Eosinophalic Disorders Epilepsy | Convulsive Disorders Erectile Dysfunction and Impotence Erythromelalgia Essential Tremor Fabry Disease Facial Differences Fatty Oxidation Disorder Fetal Alcohol Syndrome Drug-Affected Fibrodysplasia Ossificans Progressiva Fibromuscular Dysplasia Fibromyalgia Floating Harbor Syndrome

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Galactosemia Gastrointestinal Stromal Tumor Gaucher Disease General Infectious Illness General Rare Disorders Glycogen Storage Disease Glycoprotein Storage Disease Gorlin Syndrome | Basal Cell Carcinoma Nevus Syndrome Graves’ Disease Guillain-Barre Syndrome Heart Disease Hellp Syndrome Hemifacial Spasm Hemiplegia Hemophilia Hepatitis Hereditary Hemorrhagic Telangiectasia Hermansky-Pudlak Syndrome Herpes | Sexually Transmitted Diseases Hip Replacement Histiocytosis-X Human Papilloma Virus Huntington’s Disease Hydrocephalus Hyperacusis | Sensitive Hearing Hypoparathyroidism Hypospadias | Epispadias Hypothyroid Ichthyosis Idiopathic Thrombocytopenic Purpura Incontinence | Nocturnal Enyresis | Diurnal Incontinentia Pigmenti Infertility | Childlessness Inflammatory Bowel Disease | Irritable Bowel Syndrome Interstitial Cystitis Intestinal Multiple Polyposis Iron Disorders Kabuki Syndrome Kallmann Syndrome (Hypogonadotrophic Hypogonadism) Kawasaki Disease Kennedy’s Disease Kidney Disease Klinefelter Syndrome Laryngectomy Lead Poisoning 7

Lennox-Gastaut Syndrome Leukodystrophy Life Threatening | Chronic | Terminal Illness Little People Liver Disease Loin Pain Hematuria Syndrome Lowe Syndrome Lupus Lyme Disease Lymphangioleiomyomatosis (LAM) Lymphedema Lysosomal Acid Lipase Deficiency Macrocephaly-Capillary Malformation Marfan Syndrome Mastocytosis McCune-Albright Syndrome | Fibrous Sysplasia Meningioma (Brain Tumor) Menopause Metabolic Disorders Meyer-Rikitansky-Kuester-Hauser Syndrome Miller’s Syndrome Mitochondrial Disorders Mœbius Syndrome Motility Disorders Moya-Moya Disease Mucopolysaccharidoses | Morquio’s Syndrome Mullerian Anomalies Multiple Endocrine Neoplasia Disorders Multiple Hereditary Exostoses Multiple Myeloma Multiple Sclerosis Multiple System Atrophy Muscular Dystrophy Myasthenia Gravis Myelphroliferative Disease Myositis Myotonia Congenita | Myeloproliferative Disease Nager Syndrome Narcolepsy Nephrotic Syndrome Neurodegeneration With Brain Iron Accumulation Neurofibromatosis Neuropathy Niemann-Pick Disease Nonketotic Hyperglycinemia Nystagmus 8

Opsoclonus-Myoclonus Syndrome Organ Transplant Recipient Orthopedic (Knee, Hip, Back, Shoulder) Osteogenesus Imperdecta Osteonecrosis | Avascular Necrosis Osteoporosis Ostomy Oxalosis & Hyperoxaluria Painless | Nonischemic Priapism Panhypopituitarism Papillomatosis Parkinson’s Disease Parry-Romberg Syndrome Pediatric Autoimmune Neuropsychiatric Disorders Associated With Strep Pemphigus | Hailey Hailey Peter’s Anomaly Peyronie’s Disease Pierre Robin Pituitary Disorders Polio Polymicrogyria Polysystic Ovarian Syndrome Prader-Willi Syndrome Precocious Puberty Premature Ovarian Failure Premenstrual Dysphoric Disorder Primary Immunodeficiency Primary Lateral Sclerosis Progressive Supranuclear Palsy Prosopagnosia – Face Blindness Prostate Problems Prune Belly Syndrome Pseudoxanthoma Elasticum Psoriasis Pulmonary Hypertension Raynaud’s Disease Reflex Sympathetic Dystrophy Respiratory Disease | Emphysema Rett Syndrome Robinow Syndrome Rubinstein-Taybi Syndrome Russell-Silver Syndrome Sarcoidosis Schizencephaly Schwachman-Diamond Syndrome Scleroderma 9

Scoliosis Septo Optic Dysplasia Severe Combined Immunodeficiency Disease Short Bowel Syndrome Sickle Cell Disease Sjogren’s Syndrome Skin Disorders Sleep Apnea Smith-Lemi-Opitz (RSH) Syndrome Sotos Syndrome Spasmodic Dysphonia Spasmodic Torticollis Spastic Paraparesis | Familial Spastic Paraplegia Spina Bifida Spinal Cord Tumor Spinal Muscular Atrophy Stevens Johnson Syndrome Stickler Syndrome Strabismus (Cross-Eyed) Stroke Swallowing Issues | Dysphagia Syringomyelia Tay-Sachs Disease Temporomandibular Joint Dysfunction (TMJ) Thrombophilia Thyroid Tourette Syndrome Townes-Brocks Syndrome Tracheo Espphageal Fistula Transverse Myelitis Trichorhinophalangeal Syndrome Trigeminal Neuralgia | Tic Douloureux Trimethylaminura Trisomy Tube Feeding Tuberous Sclerosis Twin To Twin Transfusion Syndrome Undiagnosed Illness Urea Cycle Disorders Valley Fever Vascular Anomalies Vascular Birthmarks Velo-Cardio-Facial Syndrome Ventilator Users Vestibular Disorders Vitiligo 10

Von Hippel Lindau Syndrome Vulvar Disorders Wagr Syndrome Waldenstrom’s Macroglobulinemia Wegener’s Granulomatosis Williams Syndrome Willis-Ekbom Disease Wilson’s Disease Worster-Drought Xerpderma Pigmentosum MENTAL HEALTH Anxiety Attacks | Phobias | Agoraphobia Depression | Bipolar Disorder | Post-Partum Depression Eating Disorders Families of Persons With Mental Illness General Mental Health Kleptomania | Shoplifting Maladaptive Daydreaming Mental Health Consumers Messiness | Clutterers | Hoarders Obsessive-Compulsive Disorder Procrastination Self-Abuse | Self-Mutilation Trauma and Post Traumatic Stress Disorder Workaholics MISCELLANEOUS Artistic Creativity Bullying Crime Victims | Offenders Cults Employment | Unemployment Financial | Bankruptcy Housing | Foreclosures LGBTQIA Lightening | Electrical Shock Near Death Experience Prostitution | Sex Workers Religion | Clergy Veterans | Military Women’s Issues Youth | Students Table of Contents for Toll–Free Helplines & Web Resources Table of Contents for Self–Help Group Clearinghouses Worldwide

“The Volunteers are the heart and soul of the Clearinghouse” – Wendy Rodenbaugh, Information &Referral Assistant 11

ABUSE

CHILD ABUSE (PHYSICAL | EMOTIONAL)

NATIONAL | INTERNATIONAL | MODEL Adult Survivors of Child Abuse International. 29 affiliated groups. Founded 1993.

Mutual support for adult survivors of physical, sexual and/or emotional child abuse or neglect. Encourages victims to become survivors, then thrivers. Online support group meetings, monthly newsletter, group starter manual and general information. Offers assistance in starting groups. Write: Adult Survivors, P.O. Box 281535, San Francisco, CA 94114-0038. Call 415-937-1854. Website: http://www.ascasupport.org E-mail: info@ascasupport.org The Lamplighter Movement International. 92 chapters in 13 countries. Support for individuals who are recovering from any kind of sexual abuse, incest, child sexual abuse, rape, domestic violence or sexual assault. Help in starting new local support chapters. To find an existing group in ones area click on “Chapter Locations.” For starting new groups click on “Start a Group in Your Area” (both on the Navigation section on the upper left). Website: http://www.thelamplighters.org E-mail: margie@thelamplighters.org

ONLINE | TELEPHONE isurvive Online. Founded 2001. Provides mutual support for adult survivors of child abuse and their loved ones. Forums include: physical, sexual, verbal, emotional and ritual abuse survivors. Offers both open and private chat rooms. Website: http://www.isurvive.org E-mail: isurvive@hush.com SEXUAL ABUSE | INCEST | RAPE

NATIONAL | INTERNATIONAL | MODEL Adult Survivors of Child Abuse International. 29 affiliated groups. Founded 1993.

Mutual support for adult survivors of physical, sexual and/or emotional child abuse or neglect. Encourages victims to become survivors, then thrivers. Online support group meetings, monthly newsletter, group starter manuals and general information. Offers assistance in starting groups. Write: Adult Survivors, P.O. Box 281535, San Francisco, CA 94128. Call 415-937-1854. Website: http://www.ascasupport.org Email: info@ascasupport.org

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Incest Survivors Anonymous (I.S.A.) International. Founded 1980. Uses 12step/12-traditions, principles and tools of recovery. Fellowship of men, women and teens who meet to share their experience, strength and hope so that they may recover from their incest experiences and break free to freedom and a new peace of mind.

Open to anyone sexually abused as a child (abuser does not have to be a family member). Offers several packets of information, pen pals, I.S.A. E-mail Family Letter, CDs and cassettes. Not open to initiators, pedophiles, child molesters or Satanists.

Provides assistance in starting I.S.A. groups. When writing send a self-addressed stamped envelope (2 stamps). Write: I.S.A., P.O. Box 17245, Long Beach, CA 908077245. Call 562-428-5599. Website: http://www.lafn.org/medical/isa E-mail: isa@lafn.org The Lamplighter Movement International. 92 chapters in 13 countries. Support for individuals who are recovering from any kind of sexual abuse, incest, child sexual abuse, rape, domestic violence or sexual assault. Help in starting new local chapters.

To find an existing group in ones area click on “Chapter Locations.” For starting new groups click on “Start a Group in Your Area” (both on the Navigation section on the upper left). Website: http://www.thelamplighters.org E-mail: margie@thelamplighters.org Male Survivor (National Organization Against Male Sexual Victimization) National.

Founded 1995. Information and referrals for male survivors of sexual assault and the professionals working with them. Conference every two years, referrals to local resources, discussion board, chatroom, newsletter, periodic regional retreats offered and online bulletin board. Write: Male Survivor, PMB 103, 5505 Connecticut Ave. NW, Washington, DC 20015-2601. Call 1-800-738-4181. Website: http://www.malesurvivor.org SNAP (Survivors Network of those Abused by Priests) International. 65+ affiliated groups. Founded 1988. Support for men and women who were sexually abused by any clergy person (priest, brother, nun, deacon, teacher, rabbi, scouting and any institutional setting.) Extensive phone network, newsletter, advocacy, conferences, information and referrals. Information on finding support groups. Write: SNAP, P.O. Box 6416, Chicago, IL 60680-6416. Call 1-877-762-7432. Website: http://www.snapnetwork.org E-mail: bblaine@snapnetwork.org Survivors of Incest Anonymous International. 300 groups. Founded 1982. 12-Step.

Program for men and women, 18 yrs. or older, who have been victims of childhood sexual abuse, are not abusing any child and want to be survivors. Free online newsletter, literature ($22). Offers assistance in starting groups, volunteer information, referral line, speakers’ bureau, online and phone meetings. Send self-addressed

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stamped envelope when writing (include a donation if possible). Write: SIA, P.O. Box 190, Benson, MD 21018-9998. Call 410-893-3322. Website: http://www.siawso.org

ONLINE | TELEPHONE After Silence Online. Provides support for rape, sexual assault and sexual abuse survivors via message boards and chatrooms. Website: http://www.aftersilence.org Betrayed Boys - Betrayed Alone, United Together Online. Provides support for male survivors of childhood sexual abuse. Welcomes partners, children, parents, siblings and friends. Chatrooms, discussion boards and resources. Website: http://www.betrayedboys.com E-mail: admin@betrayedboys.com isurvive Online. Founded 2001. Provides mutual support for adult survivors of child abuse and their loved ones. Forums include: physical, sexual, verbal, emotional and ritual abuse survivors. Offers both open and private chat rooms. Website: http://www.isurvive.org E-mail: isurvive@hush.com Pandora’s Project Online. Founded 1999. Provides support, education and resources to sexual violence survivors and their supporters. Operates an online support group, message board and chatroom for rape and sexual abuse survivors. Offers a Sexual Assault Lending Library, which lends materials on sexual violence and recovery, free of charge. Newsletter, literature and national conference. Website: http://www.pandorasproject.org and http://www.pandys.org/forum Support for Partners Online. Support for partners of those who have been sexually abused and traumatized. E-mail to access website. Website: http://www.supportforpartners.org E-mail: steve@supportforpartners.org SPOUSAL ABUSE | DOMESTIC VIOLENCE

NATIONAL | INTERNATIONAL | MODEL The Lamplighter Movement International. 92 chapters in 13 countries. Support for individuals who are recovering from any kind of sexual abuse, incest, child sexual abuse, rape, domestic violence or sexual assault. Help in starting new local chapters.

To find an existing group in ones area click on “Chapter Locations.” For starting new groups click on “Start a Group in Your Area” (both on the Navigation section on the upper left). Website: http://www.thelamplighters.org E-mail: margie@thelamplighters.org

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ADDICTIONS

ALCOHOL ABUSE

NATIONAL | INTERNATIONAL | MODEL AANA Nurse Anesthetists in Recovery National network. Founded 1984. 250 members. Network of recovering nurse anesthetists. Provides phone support, information and referrals to groups and treatment. Write: AIR, c/o Art, 8233 Brookside Rd., Elkins Park, PA 19027. Call 215-635-0183 or 215-872-6821. Website: http://aana.com/resources2/peer-assistance/pages/default.aspx Adult Children of Alcoholics World Services Organization International. 1500+ meetings. Founded 1977. 12-Step. Program of recovery for individuals who were raised in an alcoholic or otherwise dysfunctional household. Group development guidelines, newsletter and literature. Send a self-addressed stamped envelope when writing. Write: ACAWSO, P.O. Box 3216, Torrance, CA 90510. Call 562-595-7831.

Website: http://www.adultchildren.org Al-Anon Family Groups, Inc. National. 25,295 groups. Founded 1951. 12-Step.

Fellowship of men, women and adolescents lives have been affected by the drinking of a family member or friend. Opportunity for personal recovery and growth. Guidelines for starting groups. Literature is available in over 40 languages. Write: Al-Anon Family Group Headquarters, Inc., 1600 Corporate Landing Parkway, Virginia Beach, VA 23454-5617. Call 757-563-1600; for meeting information call 1-888-425-2666 (Mon.Fri., 8am-6pm EST; English/French/Spanish); Fax: 757-563-1655. Website: http://www.al-anon.org E-mail: wso@al-anon.org Alateen (MULTILINGUAL) International. 1745 groups. Founded 1957. 12-Step.

Fellowship of young persons whose lives have been affected by someone else’s drinking. An active adult member of Al-Anon who is certified as eligible serves as a sponsor for each group. Group development guidelines and newsletter. Literature is available in over 30 languages. Write: Alateen, c/o Al-Anon Family Group Headquarters Inc., 1600 Corporate Landing Parkway, Virginia Beach, VA 23454-5617.

Call 757-563-1600; for meeting information call 1-888-425-2666 (Mon.-Fri., 8am-6pm EST; English/French/Spanish); Fax: 757-563-1655. Website: http://www.alanon.alateen.org E-mail: wso@al-anon.org Alcoholics Anonymous World Services, Inc. (MULTILINGUAL) International.

106,000 groups worldwide. Founded 1935. 12-Step. Fellowship of women and men 15

who are seeking a solution to their drinking problem. The only requirement for membership is a desire to stop drinking. Supported by voluntary contributions of its members and groups. A.A. neither seeks nor accepts outside funding. Members observe personal anonymity at the public level, thus emphasizing A.A. principles rather than personalities. For more information check your local phone directory. Write: General Service Office, P.O. Box 459, Grand Central Station, New York, NY 10163.

Call 212-870-3400; Fax: 212-870-3003. Website: http://www.aa.org All Addictions Anonymous 12-Step. International. Founded 2003. Mutual support for all addictions including alcohol, drugs, food, sex, smoking and gambling. Write: AAA World GSO, 40 Wickstead Way, Thornhill, ON L3T 5E4, Canada. Call 416-6577771. Website: http://alladdictionsanonymous.org E-mail: info@alladdictionsanonymous.org Birds of a Feather International. Founded 1972. 12-Step. Program to help airmen (pilots and crewmembers) who are active or inactive in private, commercial or military aviation suffering from alcohol or drug addiction. Members share experience, strength and hope in order to help each other. Groups (called “nests”) are autonomous.

Assistance in starting new “nests.” NetNest online computer-based e-mail meeting.

Newsletter. Annual convention. Write: BOAF, 510 Old Valley Pt., Fayetteville, GA 30215. Website: http://www.boaf.org Buddhist Recovery Network International. Founded 2008. Meetings in the US, Australia, Canada, Thailand and in the UK. Supports the use of Buddhist teachings, traditions and practices to help people in recovery from addiction. Open to people of all backgrounds. Promotes mindfulness and meditation. Write: Buddhist Recovery Network, c/o Timothy O’Brien, 312 NW 85th St., #306, Seattle, WA 98117. Website: http://www.buddhistrecovery.org Calix Society International. 20 chapters. Founded 1947. Fellowship of Catholic alcoholics maintaining their sobriety through Alcoholics Anonymous. Concerned with total abstinence, spiritual development and sanctification of the whole personality of each member. Bimonthly newsletter. Assistance in chapter development. Write: Calix Society, P.O. Box 9085, St. Paul, MN 55109-9969. Call 651-773-3117 or 1-800-3980524. Website: http://www.calixsociety.org E-mail: calix@usfamily.net Chemically Dependent Anonymous National. 38 affiliated groups. Founded 1980.

12-step fellowship whose purpose is to carry the message of recovery to the chemically dependent person. For those with a desire to abstain from drugs or alcohol.

Information, referrals, phone support and conferences. Group development guidelines.

Write Chemically Dependent Anonymous, P.O. Box 423, Severna Park, MD 21146.

Call 1-888-232-4673 or 1-888-CDC-HOPE. Website: http://www.cdaweb.org 16

Dual Diagnosis Anonymous Model Group. Approximately a hundred groups in Oregon. Founded 2005. A peer support group based on the 12-steps, which has an additional 5-Steps that focus upon dual recovery (from both mental illness and substance abuse). DDA groups are primarily in Oregon. Email or phone for information on some DDA groups outside Oregon, or for free help in starting a new group, click on “Printable Material” to see handouts, which includes information on facilitating and running a DDA group. Write: DDA, PO Box 2883, Portland, OR 92708. Call 503-7374126. Website: http://www.ddaoforegon.com E-mail: corbettm@ddaoforegon.com Dual Recovery Anonymous International. Founded 1989. 12-Step. Program for individuals who experience a dual disorder of chemical dependency and a psychiatric or emotional illness. Primary purpose is to help one another achieve dual recovery and to prevent relapse. Literature, newsletter and assistance in starting local groups. Write: Dual Recovery Anonymous, P.O. Box 8107, Prairie Village, KS 66208. Website: http://www.draonline.org (Note: listings of groups on this website may be out-of-date.

Call the contact number listed for the group before attending). E-mail: draws@draonline.org Families Anonymous International. 500+ groups. Founded 1971. 12-Step.

Fellowship for relatives and friends of persons with drug, alcohol or behavioral problems. Members learn to achieve their own serenity in spite of the turmoil which surrounds them. Besides many booklets, pamphlets and bookmarks, publications include daily thought book, “Today A Better Way” and a bi-monthly newsletter “The Twelve-Step Rag.” Offers group development guidelines. Write: Families Anonymous, 701 Lee Street, #670, Des Plaines, IL 60016. Call 1-800-736-9805; Fax: 847-8945837. Website: http://www.familiesanonymous.org E-mail: famanon@familiesanonymous.org HAMS Harm Reduction Network, Inc. International. 1115 members. Founded 2007.

Supports positive change from safer drinking to reduced drinking to quitting alcohol altogether. Offers face-to-face meetings, e-mail groups and online chatroom. Write: HAMS Harm Reduction Network, Inc., P.O. Box 498, Prince Street Station, New York, NY 10012. Call 347-687-5671. Website: http://hamsnetwork.org E-mail: hams@hamsnetwork.org International Doctors in Alcoholics Anonymous International network. 7000 members. 175 affiliated groups. Founded 1949. Opportunity for doctoral level health care professionals to discuss common problems and find common solutions to drug and alcohol problems. Annual meetings (1st week Aug.), phone support, newsletter, information and referrals. Mutual help meetings at conferences of other organizations.

Also, Al-Anon program for helping families and friends of alcoholics recover from the effects of living with the problem drinking of a relative or friend. In addition, website provides links to several listgroups (ongoing recovery-related meetings conducted by 17

e-mail). Write: IDAA, c/o Michael Metcalf, 8514 East Maringo Dr., Spokane, WA 99212. Call 509-928-4102. Website: http://www.idaa.org International Lawyers in Alcoholics Anonymous International. 40+ affiliated groups. Founded 1975. Serves as a clearinghouse for support groups for lawyers who are recovering alcoholics or have other chemical dependencies. Newsletter, annual conventions and group development guidelines. Write: ILAA, c/o Eli Gauna, 17216 Saticoy St., Suite 211, Van Nuys, CA 91406. Call 818-343-2189 (day); Fax: 1-888-2696045. Website: http://www.ilaa.org International Ministers and Pastors in Recovery International. Founded 1988.

Provides mutual support for pastors and ministers recovering from addictions and actively participating in a 12-step recovery program. Provides phone network, meetings at an international 12-step conference, information and referrals. Assistance in starting local/regional groups. Write: International Ministers and Pastors in Recovery, P.O. Box 1515, Palm Desert, CA 92261. Call 314-808-5470. E-mail: fresh12st@aol.com JACS (Jewish Alcoholics, Chemically Dependent Persons and Significant Others) International. Founded 1980. For alcoholic and chemically dependent Jews, families, friends, associates and the community. Networking, community outreach, retreats, newsletter, literature, spiritual events and speakers’ bureau. Write: JACS, 135 W. 50th St., 6th Floor, New York, NY 10020. Call 212-632-4600 (day); Fax: 212399-3525. Website: http://www.jbfcs.org/jacs E-mail: jacs@jacsweb.org

LifeRing Secular Recovery International. Founded 1999. Secular community of persons who are building lives free of dependency on alcohol and other drugs. Group activities are not associated with religion or spirituality. Members practice complete abstinence from alcohol and other addicting drugs. Peer support, literature, information, referrals and advocacy activities. Guidelines available for starting similar groups. Offers face-to-face meetings along with online support groups accessed by email, chat, bulletin board, and social-networking sites. Publishes sobriety literature.

Write: LifeRing Secular Recovery, 1440 Broadway, Suite 312, Oakland, CA 946122023. Call 1-800-811-4142 or 510-763-0779. Website: http://www.lifering.org E-mail: service@lifering.org Men for Sobriety International. 5 affiliated groups. Founded 1976. Purpose is to help all men recover from chemical addiction through the discovery of self, gained by sharing experiences, hopes and encouragement with other men in similar circumstances. Recognizes men’s complex role in today’s society. Write: Men for

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Sobriety, P.O. Box 618, Quakertown, PA 18951-0618. Call 215-536-8026; Fax: 215538-9026. E-mail: newlife@nni.com Moderation Management International. 25 groups. Founded 1993. Behavioral change program and support network for people concerned about their drinking and who desire to make positive lifestyle changes. Empowers individuals to accept personal responsibility for choosing and maintaining their own path, whether moderation or abstinence. Promotes early self-recognition of risky drinking behavior when moderation is a more easily achievable goal. Online meetings, chatroom topic meetings, listservs and moderation-friendly therapist listings. Write: Moderation Management Network, Inc., 2795 East Bidwell Street, Ste 100-244, Folsom, CA 95630-6480. Website: http://moderation.org E-mail: mm@moderation.org Overcomers In Christ International. Founded 1987. 100 Chapters. Recovery program that deals with every aspect of addiction and dysfunction (spiritual, physical, mental, emotional and social). Uses Overcomers goals which are Christ-centered.

Resources, literature, information and referrals. Assistance in starting new groups.

Write: Overcomers In Christ, P.O. Box 34460, Omaha, NE 68134. Call 1-866-5730966. Website: http://www.overcomersinchrist.org E-mail: oic@overcomersinchrist.org Overcomers Outreach, Inc. International. 700 affiliated groups. Founded 1985. 12Step. Christ-centered. Support for anyone affected by addictions, as well as their families and friends. Uses 12-steps of A.A. and applies them to the Scriptures. Uses Jesus Christ as the “higher power”. Supplements involvement in other 12-step groups.

Newsletter, group development guidelines and conferences. Write: Overcomers Outreach, Inc., 12828 Acheson Dr., Whittier, CA 90601. Call 1-800-310-3001.

Website: http://www.overcomersoutreach.org E-mail: info@overcomersoutreach.org Pharmacists Recovery Network International Resource. Formed in 1996. Helps direct pharmacists and student pharmacists with an addiction to appropriate 12-step and other resources for peer support and recovery, e.g., IDAA. Provides an email support network for those running local or regional pharmacist recovery networks, or who are interested in developing such support networks where none currently exist.

Website: http://www.usaprn.org E-mail: broussardc@aol.com Recoveries Anonymous 12-Step. International. 50 chapters. 12-Step. Spiritual recovery group for anyone seeking solution for any kind of addiction, problem or behavior. Families and friends welcome. Face-to-face and telephone meetings available. For information visit website and click on “Meetings” tab or “Contact Us” tab.

Free “How To Begin...” guides and “Start A Group” kit can be downloaded for free from 19

the website. Write: R.A. Universal Services, P.O. Box 1212, East Northport, NY 11731. Website: http://www.r-a.org E-mail: ra@r-a.org

Secular Organizations for Sobriety (Save Ourselves) International. Founded 1986.

Mutual help for alcoholics and addicts who want to acknowledge their addiction and maintain sobriety as a separate issue from religion or spirituality. Newsletter.

Guidelines and assistance available for starting groups. Real-time online chats and egroups available. Write: Secular Organizations for Sobriety, 4773 Hollywood Blvd., Hollywood, CA 90027. Call 323-666-4295; Fax: 323-666-4295. Website: http://www.sossobriety.org E-mail: sos@cfiwest.org SMART Recovery (Self-Management And Recovery Training) International. 900+ affiliated groups. Founded 1994. Network of self-help groups for individuals wanting to gain their independence from addictive and compulsive behaviors. SMART Recovery is an abstinence program based on cognitive-behavioral principles, especially those of rational-emotive behavior therapy. Daily online meetings, message boards, newsletter, information, referrals, chatroom, literature and assistance in starting local groups.

Write: SMART Recovery, 7304 Mentor Ave., Suite F, Mentor, OH 44060. Call 1-866951-5357 or 440-951-5357; Fax: 440-951-5358. Website: http://www.smartrecovery.org E-mail: information@smartrecovery.org Social Workers Helping Social Workers Founded 1980. A national network of MSW’s, BSW’s and students who have a personal experience with alcohol/chemical dependence, either their own or that of a significant other. Social workers with other addictions are welcomed to attend meetings. Primary purpose is to facilitate mutual support among the members though a combination of meetings, workshops, newsletter, email, lists, a monthly online meeting, telephone contacts, and an annual retreat/conference. Contact via website. Website http://www.socialworkershelping.org

Women For Sobriety International. 150 groups. Founded 1976. Program designed specifically to help chemically addicted women achieve sobriety. Addresses need to overcome depressed feelings and guilt. Monthly newsletter, information and referrals, phone support, group meetings, conferences and group development guidelines.

Write: Women for Sobriety, P.O. Box 618, Quakertown, PA 18951-0618. Call 215-5368026; Fax: 215-538-9026. Website: http://www.womenforsobriety.org E-mail: newlife@nni.com

ONLINE | TELEPHONE 20

Addiction Survivors Online. Provides peer support communities for those with drug/alcohol addiction, family and friends. Website: http://www.addictionsurvivors.org Conduct Disorders Parent Message Board Online. 7080 members. Founded 1995.

Support for parents of a child with one of the many behavior disorders such as attention deficit hyperactivity disorder, oppositional defiance disorder, bipolar disorder, conduct disorder, depression, anxiety and substance abuse. Parents of children all ages welcome. Website: http://www.conductdisorders.com Crossroads Phone Meetings * Provides Christian support by phone to those who are in recovery. Crossroads is for Christians (or people who want to learn about Jesus Christ) seeking an opportunity to grow with other Believers who have experienced the pain of getting caught up in the cycle of addiction. We are Non-Denominational, and welcome anyone seeking recovery through a faith based approach. Please visit our website for meeting times, and instructions on how to participate. Call 206-350-7889.

Website: www.crossroadsphonemeetings.com Wings of Sobriety Telephone. Support for flight attendants, pilots and anyone associated with flying to recover from drugs and alcoholism. Meets Wed., 3:00pm and Sat., 9pm (EST). Conference call number 1-877-336-1839. International Access is 636-651-0008. The access code for both numbers is 7146709.

CODEPENDENCY | DYSFUNCTIONAL FAMILIES

NATIONAL | INTERNATIONAL | MODEL Chapter 9 Couples in Recovery Anonymous 12-Step. Phone conference support group for couples or singles who are in a committed relationship. Meeting Sun. from 78pm. Call 712-432-1500 access code 793614# for meeting. For more information call Reva 732-890-6312. E-mail: irvnrevak@yahoo.com Co-Dependents Anonymous International. Founded 1986. 12-Step. Self-help program of recovery from co-dependence. Members share experience, strength and hope in an effort to find freedom and peace in relationships with themselves and others. Library of literature and audio tapes. Guidelines on starting a similar group available. Newsletter and listing of local support groups online. Write: CoDA, P.O. Box 33577, Phoenix, AZ 85067-3577. For local support groups call 602-277-7991; 1-888444-2359; 1-888-444-2379 (Spanish). Website: http://www.coda.org E-mail: info@coda.org or espanol@coda.org Overcomers In Christ International. Founded 1987. 100 Chapters. Recovery program that deals with every aspect of addiction and dysfunction (spiritual, physical, mental, emotional and social). Uses Overcomers goals which are Christ-centered.

Resources, literature, information and referrals. Assistance in starting new groups.

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Write: Overcomers In Christ, P.O. Box 34460, Omaha, NE 68134. Call 1-866-5730966. Website: http://www.overcomersinchrist.org E-mail: oic@overcomersinchrist.org

ONLINE | TELEPHONE Crossroads Phone Meetings * Provides Christian support by phone to those who are in recovery. Crossroads is for Christians (or people who want to learn about Jesus Christ) seeking an opportunity to grow with other Believers who have experienced the pain of getting caught up in the cycle of addiction. We are Non-Denominational, and welcome anyone seeking recovery through a faith based approach. Please visit our website for meeting times, and instructions on how to participate. Call 206-350-7889.

Website: www.crossroadsphonemeetings.com No More Mr. Nice Guy Online. Support for individuals who are tired of “impersonating a doormat� and who are constantly seeking approval. Website: http://www.nomoremrniceguy.com/forums DEBT | OVERSPENDING

NATIONAL | INTERNATIONAL | MODEL Debtors Anonymous International. 520 groups. Founded 1976. 12-Step. Fellowship that provides mutual help in recovering from compulsive indebtedness. Primary purpose of members is to stay solvent and help other compulsive debtors achieve solvency. Offers over 500 face-to-face meetings world-wide, plus meetings via telephone and internet. DA also includes BDA (Business Debtors Anonymous) which is a distinct and dynamic but not separate part of DA, created to focus on the recovery of members of the fellowship who are business owners. Write: Debtors Anonymous, P.O. Box 920888, Needham, MA 02492-0009. Call 1-800-421-2383 (US only) or 781-4532743; Fax: 781-453-2745. Website: http://www.debtorsanonymous.org E-mail: office@debtorsanonymous.org Overcomers In Christ International. Founded 1987. 100 Chapters. Recovery program that deals with every aspect of addiction and dysfunction (spiritual, physical, mental, emotional and social). Uses Overcomers goals which are Christ-centered.

Resources, literature, information and referrals. Assistance in starting new groups.

Write: Overcomers In Christ, P.O. Box 34460, Omaha, NE 68134. Call 1-866-5730966. Website: http://www.overcomersinchrist.org E-mail: oic@overcomersinchrist.org Overcomers Outreach, Inc. International. 700 affiliated groups. Founded 1985. 12Step. Christ-centered. Support for anyone affected by addictions, as well as their families and friends. Uses 12-steps of A.A. and applies them to the Scriptures. Uses 22

Jesus Christ as the “higher power”. Supplements involvement in other 12-step groups.

Newsletter, group development guidelines and conferences. Write: Overcomers Outreach, Inc., 12828 Acheson Dr., Whittier, CA 90601. Call 1-800-310-3001. Website: http://www.overcomersoutreach.org E-mail: info@overcomersoutreach.org Recoveries Anonymous 12-Step. International. 50 chapters. 12-Step. Spiritual recovery group for anyone seeking a solution for any kind of addiction, problem or behavior. Families and friends welcome. Face-to-face and telephone meetings available. For more information visit website and click on “Meetings” tab or “Contact Us” tab. Free “How To Begin...” guides and “Start A Group” kit can be downloaded from the website. Write: R.A. Universal Services, P.O. Box 1212, East Northport, NY 11731. Website: http://www.r-a.org E-mail: ra@r-a.org

Spenders Anonymous National. Support for those who have problems spending compulsively using the 12-step approach. Script for running a meeting is on website.

Call 651-649-4573 (meeting information). Website: http://www.spenders.org

ONLINE | TELEPHONE Crossroads Phone Meetings * Provides Christian support by phone to those who are in recovery. Crossroads is for Christians (or people who want to learn about Jesus Christ) seeking an opportunity to grow with other Believers who have experienced the pain of getting caught up in the cycle of addiction. We are Non-Denominational, and welcome anyone seeking recovery through a faith based approach. Please visit our website for meeting times, and instructions on how to participate. Call 206-350-7889.

Website: www.crossroadsphonemeetings.com Debt-Anon Telephone Support Group 12-Step. Fellowship of family members and friends dealing with compulsive debting. Meets Sun. at 1pm (EST). Call 712-432-0385 access code 74951#. Website: http://www.debtanon.org E-mail: debtanon.Telephone.meeting@gmail.com DRUG ABUSE

NATIONAL | INTERNATIONAL | MODEL AANA Nurse Anesthetists in Recovery National network. 250+ members. Founded 1984. Network of recovering nurse anesthetists. Provides phone support, information and referrals to groups and treatment. Write: AIR, c/o Art, 8233 Brookside Rd., Elkins Park, PA 19027. Call 215-635-0183 or 215-872-6821; Fax: 215-829-8757. Website: http://aana.com/resources2/peer-assistance/pages/default.aspx

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All Addictions Anonymous 12-Step. International. Founded 2003. Mutual support for all addictions including alcohol, drugs, food, sex, smoking and gambling. Write: AAA World GSO, 40 Wickstead Way, Thornhill, ON L3T 5E4, Canada. Call 416-6577771. Website: http://alladdictionsanonymous.org E-mail: info@alladdictionsanonymous.org Birds of a Feather International. Founded 1972. 12-Step. Program to help airmen (pilots and crewmembers) who are active or inactive in private, commercial or military aviation suffering from alcohol or drug addiction. Members share experience, strength and hope in order to help each other. Groups (called “nests”) are autonomous.

Assistance in starting new “nests.” NetNest online computer-based e-mail meeting.

Newsletter. Annual convention. Write: BOAF, 510 Old Valley Pt. Fayetteville, GA 30215. Website: http://www.boaf.org Buddhist Recovery Network International. Founded 2008. Meetings in the US, Australia, Canada, Thailand and in the UK. Supports the use of Buddhist teachings, traditions and practices to help people in recovery from addiction. Open to people of all backgrounds. Promotes mindfulness and meditation. Write: Buddhist Recovery Network, c/o Timothy O’Brien, 312 NW 85th St., #306, Seattle, WA 98117. Website: http://www.buddhistrecovery.org Chemically Dependent Anonymous National. 38 affiliated groups. Founded 1980.

12-step fellowship whose purpose is to carry the message of recovery to the chemically dependent person. For those with a desire to abstain from drugs or alcohol.

Information, referrals, phone support and conferences. Group development guidelines.

Write Chemically Dependent Anonymous, P.O. Box 423, Severna Park, MD 21146.

Call 1-888-232-4673 or 1-888-CDC-HOPE. Website: http://www.cdaweb.org Co-Anon Family Groups International. 28 groups. Founded 1985. 12-Step. Program for families and friends of cocaine, crack and other drug addicts, whether they are actively using or not. Online, e-mail and face-to-face meetings. Provides assistance in starting new groups. Write: Co-Anon Family Groups, P.O. Box 3664, Gilbert, AZ 85299. Call 520-513-5028. Website: http://www.co-anon.org E-mail: info@coanon.org Cocaine Anonymous, Inc. International. 2500 chapters. Founded 1982. 12-Step.

Fellowship of men and women who share their experience, strength and hope that they may solve their common problem and help others to recover from addiction.

Quarterly newsletter. Group starter kit available. Write: Cocaine Anonymous, 21720 S. Wilmington Ave., Suite 304, Long Beach, CA 90810. For local chapters call 1-800-3478998 (24 hr.) or 310-559-5833 (business office); Fax: 310-559-2554. Website: http://ca.org E-mail: cawso@ca.org 24

Crystal Meth Anonymous National. 12-Step. Fellowship for those in recovery from addiction to crystal meth. Open to families and friends. Information on starting a group available. Meetings list available on website. Write: Crystal Meth Anonymous, 4470 W Sunset Blvd., Ste 107 PMB 555, Los Angeles, CA 90027-6302. Call 1-855-638-4373 (toll-free) or 213-488-4455. Website: http://www.crystalmeth.org Dual Diagnosis Anonymous Model Group. Approximately a hundred groups in Oregon. Founded 2005. A peer support group based on the 12-steps, which has an additional 5-Steps that focus upon dual recovery (from both mental illness and substance abuse). DDA groups are primarily in Oregon. Email or phone for information on some DDA groups outside Oregon, or for free help in starting a new group, click on “Printable Material” to see handouts, which includes information on facilitating and running a DDA group. Write: DDA, PO Box 2883, Portland, OR 92708. Call 503-7374126. Website: http://www.ddaof_oregon.com E-mail: corbettm@ddaof_oregon.com Dual Recovery Anonymous International. Founded 1989. 12-Step. Program for individuals who experience a dual disorder of chemical dependency and a psychiatric or emotional illness. Primary purpose is to help one another achieve dual recovery and to prevent relapse. Literature, newsletter and assistance in starting local groups. Write: Dual Recovery Anonymous, P.O. Box 8107, Prairie Village, KS 66208. Website: http://www.draonline.org (Note: listings of groups on this website may be out-of-date.

Call the contact number listed for the group before attending). E-mail: draws@draonline.org Families Anonymous International. 500+ groups. Founded 1971. 12-Step.

Fellowship for relatives and friends of persons with drug, alcohol or behavioral problems. Members learn to achieve their own serenity in spite of the turmoil which surrounds them. Besides many booklets, pamphlets and bookmarks, publications include daily thought book, “Today A Better Way” and a bimonthly newsletter “The Twelve-Step Rag.” Offers group development guidelines. Write: Families Anonymous, 701 Lee St., #670, Des Plaines, IL 60016. Call 1-800-736-9805; Fax: 847-894-5837.

Website: http://www.familiesanonymous.org E-mail: famanon@familiesanonymous.org

Heroin Anonymous World Service 12-Step. Founded 2004. Support for heroin addicts from other former addicts who have found a way to recover from their addiction. Only requirement is the desire to life a life free of heroin. Help in the formation of new groups. Write: HAWS, 5025 N. Central Ave., #587, Phoenix, AZ 85012. Website: http://www.heroinanonymous.org E-mail: heroinanonymoussws480@gmail.com

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International Doctors in Alcoholics Anonymous International network. 7000 members. 175 affiliated groups. Founded 1949. Opportunity for doctoral level health care professionals to discuss common problems and find common solutions to drug and alcohol problems. Annual meetings (1st week Aug.), phone support, newsletter, information and referrals. Mutual help meetings at conferences of other organizations.

Also, Al-Anon program for helping families and friends of alcoholics recover from the effects of living with the problem drinking of a relative or friend. In addition, website provides links to several listgroups (ongoing recovery-related meetings conducted by e-mail). Write: IDAA, c/o Michael Metcalf, 8514 East Maringo Dr., Spokane, WA. Call 509-928-4102. Website: http://www.idaa.org International Lawyers in Alcoholics Anonymous International. 40+ affiliated groups. Founded 1975. Serves as a clearinghouse for support groups for lawyers who are recovering alcoholics or have other chemical dependencies. Newsletter, annual conventions and group development guidelines. Write: ILAA, c/o Eli Gauna, 17216 Saticoy St., Suite 211, Van Nuys, CA 91406. Call 818-343-2189; Fax: 1-888-269-6045.

Website: http://www.ilaa.org International Ministers and Pastors in Recovery International. Founded 1988.

Provides mutual support for pastors and ministers recovering from addictions and actively participating in a 12-step recovery program. Provides phone network, meetings at an international 12-step conference, information and referrals. Assistance in starting local/regional groups. Write: International Ministers and Pastors in Recovery, P.O. Box 1515, Palm Desert, CA 92261. Call 314-808-5470. E-mail: fresh12st@aol.com JACS (Jewish Alcoholics, Chemically Dependent Persons and Significant Others) International. Founded 1980. For alcoholic and chemically dependent Jews, families, friends, associates and the community. Networking, community outreach, retreats, newsletter, literature, spiritual events and speakers’ bureau. Write: JACS, 135 W. 50th St. 6th Floor, New York, NY 10020. Call 212-632-4600 (day); Fax: 212399-3525. Website: http://www.jbfcs.org/jacs E-mail: jacs@jacsweb.org

LifeRing Secular Recovery International. Founded 1999. Secular community of persons who are building lives free of dependency on alcohol and other drugs. Group activities are not associated with religion or spirituality. Members practice complete abstinence from alcohol and other addicting drugs. Peer support, literature, information, referrals and advocacy activities. Guidelines available for starting similar groups. Offers face-to-face meetings along with online support groups accessed by email, chat, bulletin board and social networking sites.hats and forum. Publishes sobriety literature. Write: LifeRing Secular Recovery, 1440 Broadway, Suite 312, 26

Oakland, CA 94612-2023. Call 1-800-811-4142 or 510-763-0779. Website: http://www.lifering.org E-mail: service@lifering.org Marijuana Anonymous World Services International. 200+ groups. Founded 1989.

12-Step. Fellowship of men and women who desire to stay clean of marijuana.

Literature and starter packets. Write: Marijuana Anonymous World Services, P.O. Box 7807, Torrance, CA 90504. Call 1-800-766-6779 (recorded message). Website: http://www.marijuanaanonymous.org or http://www.ma-online.org (online meetings) Men for Sobriety International. 5 affiliated groups. Founded 1976. Purpose is to help all men recover from chemical addiction through the discovery of self, gained by sharing experiences, hopes and encouragement with other men in similar circumstances. Recognizes men’s complex role in today’s society. Write: Men for Sobriety, P.O. Box 618, Quakertown, PA 18951-0618. Call 215-536-8026; Fax: 215538-9026. E-mail: newlife@nni.com Nar-Anon Family Group Headquarters, Inc. International. 1600 groups. Founded 1967. 12-Step. Group offering self-help recovery to families and friends of addicts.

Members share their experience, hope and strength with each other. Information packet available for starting new groups. Nara-teen programs available. Write: NarAnon Family World Group Headquarters, Inc., 22527 Crenshaw Blvd., Suite 200B, Torrance, CA 90505. Call 1-800-477-6291 or 310-534-8188; Fax: 310-534-8688.

Website: http://www.nar-anon.org E-mail: wso@nar-anon.org Narateen International. 12-Step. Fellowship of young persons whose lives have been affected by another’s drug use. An active adult member of Nar-Anon who is certified as eligible service as a sponsor for each group. Group development guidelines and literature available. Write: Narateen, c/o Nar-Anon World Service, 222527 Crenshaw Blvd., Suite 200B, Torrance, CA 90505. Call 1-800-477-6291. Website: http://www.nar-anon.org/naranon/meetings/narateen_meetings E-mail: narateen@nar-anon.org Narcotics Anonymous (MULTILINGUAL) International. 61,800+ meetings per week in 129 countries. Founded 1953. 12-Step. Worldwide multicultural organization whose primary purpose is to help any individual stop using drugs. No dues, fees or registration. The only requirement for membership is the desire to stop using drugs.

Information is available in several languages, on audio tape, CD and in Braille and in American Sign Language. Write: Narcotics Anonymous World Services, P.O. Box 9999, Van Nuys, CA 91409. Call 818-773-9999; Fax: 818-700-0700. Website: http://www.na.org E-mail: fsmail@na.org

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Overcomers In Christ International. Founded 1987. 100 Chapters. Recovery program that deals with every aspect of addiction and dysfunction (spiritual, physical, mental, emotional and social). Uses Overcomers goals which are Christ-centered.

Resources, literature, information and referrals. Assistance in starting new groups.

Write: Overcomers In Christ, P.O. Box 34460, Omaha, NE 68134. Call 1-866-5730966. Website: http://www.overcomersinchrist.org E-mail: oic@overcomersinchrist.org Overcomers Outreach, Inc. International. 700 affiliated groups. Founded 1985. 12Step. Christ-centered. Support for anyone affected by addictions, as well as their families and friends. Uses 12-steps of A.A. and applies them to the Scriptures. Uses Jesus Christ as “higher power”. Supplements involvement in other 12-step groups.

Newsletter, group development guidelines and conferences. Write: Overcomers Outreach, Inc., 12828 Acheson Dr., Whittier, CA 90601. Call 1-800-310-3001. Website: http://www.overcomersoutreach.org E-mail: info@overcomersoutreach.org Pharmacists Recovery Network International Resource. Formed in 1996. Helps direct pharmacists and student pharmacists with an addiction to appropriate 12-step and other resources for peer support and recovery, e.g., IDAA. Provides an email support network for those running local or regional pharmacist recovery networks, or who are interested in developing such support networks where none currently exist.

Website: http://www.usaprn.org E-mail: broussardc@aol.com Pills Anonymous International. Self-help, self-supporting, anonymous 12-step program based on the principles of A.A. For those who want to help themselves and others recover from chemical addiction. Call 212-874-0700. Website: http://www.pillsanonymous.org E-mail: info@pillsanonymous.org Prescriptions Anonymous (RxA) National. Founded 1998. Groups in 35 states.

Support for individuals with prescription addiction. Provides help in forming Prescriptions Anonymous support groups nationally. Educates the public on pill addiction, lobby for prescription control programs and support online and offers resources for places to go for treatment with prescription and over-the-counter addictions. Website: http://www.prescriptionsanonymous.org Facebook: https://www.facebook.com/prescriptionsanonymous.org E-mail: info@prescriptionsanonymous.org Recoveries Anonymous 12-Step. International. 50 chapters. 12-Step. Spiritual recovery group for anyone seeking a solution for any kind of addiction, problem or behavior. Families and friends welcome. Face-to-face and telephone meetings available. For information visit website and click on “Meetings” tab or “Contact Us” tab.

Free “How To Begin...” guides and “Start A Group” kit can be downloaded from the 28

website. Write: R.A. Universal Services, P.O. Box 1212, East Northport, NY 11731.

Website: http://www.r-a.org E-mail: ra@r-a.org

Secular Organizations for Sobriety (Save Ourselves) International. Founded 1986.

Mutual help for alcoholics and addicts who want to acknowledge their addiction and maintain sobriety as a separate issue from religion or spirituality. Newsletter.

Guidelines and assistance available for starting groups. Real-time online chats and egroups available. Write: Secular Organizations for Sobriety, 4773 Hollywood Blvd., Hollywood, CA 90027. Call 323-666-4295; Fax: 323-526-1257. Website: http://www.sossobriety.org E-mail: sos@cfiwest.org SMART Recovery (Self-Management And Recovery Training) International. 900+ affiliated groups. Founded 1994. Network of self-help groups for individuals wanting to gain their independence from addictive and compulsive behaviors. SMART Recovery is an abstinence program based on cognitive-behavioral principles, especially those of rational-emotive behavior therapy. Daily online meetings, message boards, chatroom, newsletter, information, referrals, literature and assistance in starting local groups.

Write: SMART Recovery, 7304 Mentor Ave., Suite F, Mentor, OH 44060. Call 1-866951-5357 or 440-951-5357; Fax: 440-951-5358. Website: http://www.smartrecovery.org E-mail: information@smartrecovery.org Social Workers Helping Social Workers Founded 1980. A national network of MSW’s, BSW’s and students who have a personal experience with alcohol/chemical dependence, either their own or that of a significant other. Social workers with other addictions are welcomed to attend meetings. Primary purpose is to facilitate mutual support of its members though a combination of meetings, workshops, newsletter, email, lists, a monthly online meeting, telephone contacts, and an annual retreat/conference. Contact via website. Website http://www.socialworkershelping.org

ONLINE | TELEPHONE Addiction Survivors Online. Provides peer support communities for those with drug/alcohol addiction, family and friends. Website: http://www.addictionsurvivors.org Conduct Disorders Parent Message Board Online. 7080 members. Founded 1995.

Support for parents of a child with one of the many behavior disorders such as attention deficit hyperactivity disorder, oppositional defiance disorder, bipolar disorder, conduct disorder, depression, anxiety and substance abuse. Parents of children all ages welcome. Website: http://www.conductdisorders.com

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Crossroads Phone Meetings * Provides Christian support by phone to those who are in recovery. Crossroads is for Christians (or people who want to learn about Jesus Christ) seeking an opportunity to grow with other Believers who have experienced the pain of getting caught up in the cycle of addiction. We are Non-Denominational, and welcome anyone seeking recovery through a faith based approach. Please visit our website for meeting times, and instructions on how to participate. Call 206-350-7889.

Website: www.crossroadsphonemeetings.com Wings of Sobriety Telephone. Support for flight attendants, pilots and anyone associated with flying to recover from drugs and alcoholism. Meets Wed., 3:00pm and Sat., 9pm (EST). Conference call number 1-877-336-1839. International Access is 636-651-0008. The access code for both numbers is 7146709.

GAMBLING

NATIONAL | INTERNATIONAL | MODEL All Addictions Anonymous 12-Step. International. Founded 2003. Mutual support for all addictions including alcohol, drugs, food, sex, smoking and gambling. Write: AAA World GSO, 40 Wickstead Way, Thornhill, ON L3T 5E4, Canada. Call 416-6577771. Website: http://alladdictionsanonymous.org E-mail: info@alladdictionsanonymous.org Gam-Anon Family Groups International. 325 groups. Founded 1958. 12-Step.

Fellowship for men and women who are husbands, wives, relatives or friends of compulsive gamblers, who have been affected by the gambling problem. Purpose is to learn acceptance and understanding of the gambling illness, to use the program to rebuild lives and give assistance to those who suffer. To start a local meeting, contact Gam-Anon International Service Office. Write: Gam-Anon, P.O. Box 157, Whitestone, NY 11357. Call 718-352-1671 (Tues. and Thurs., 9am-5pm EST); Fax: 718-746-2571.

Website: http://www.gam-anon.org E-mail: gamanonoffice@gam-anon.org Gamblers Anonymous International. Approximately 2400 chapters. Founded 1957.

12-Step. Fellowship of men and women who share experiences, strengths & hopes with each other to recover from compulsive gambling. Monthly bulletin for members.

Offers assistance in starting new groups. Write: G.A., P.O. Box 17173, Los Angeles, CA 90017. Call 626-690-3500; Fax: 626-690-3501. Website: http://www.gamblersanonymous.org E-mail: isomain@gamblersanonymous.org Overcomers In Christ International. Founded 1987. 100 Chapters. Recovery program that deals with every aspect of addiction and dysfunction (spiritual, physical, mental, emotional and social). Uses Overcomers goals which are Christ-centered.

Resources, literature, information and referrals. Assistance in starting new groups.

Write: Overcomers In Christ, P.O. Box 34460, Omaha, NE 68134. Call 1-866-57330

0966. Website: http://www.overcomersinchrist.org E-mail: oic@overcomersinchrist.org

Overcomers Outreach, Inc. International. 700 affiliated groups. Founded 1985. 12Step. Christ-centered. Support for anyone affected by addictions, as well as their families and friends. Uses 12-steps of A.A. and applies them to the Scriptures. Uses Jesus Christ as the “higher power”. Supplements involvement in other 12-step groups.

Newsletter, group development guidelines and conferences. Write: Overcomers Outreach, Inc., 12828 Achenson Dr., Whittier, CA 90601. Call 1-800-310-3001.

Website: http://www.overcomersoutreach.org E-mail: info@overcomersoutreach.org Recoveries Anonymous 12-Step. International. 50 chapters. 12-Step. Spiritual recovery group for anyone seeking a solution for any kind of addiction, problem or behavior. Families and friends welcome. Face-to-face and telephone meetings available. For information visit website and click on the “Meetings” tab or “Contact Us” tab. Free “How To Begin...” guides and “Start A Group” kit can be downloaded for from the website. Write: R.A. Universal Services, P.O. Box 1212, East Northport, NY 11731.

Website: http://www.r-a.org E-mail: ra@r-a.org

ONLINE | TELEPHONE Crossroads Phone Meetings * Provides Christian support by phone to those who are in recovery. Crossroads is for Christians (or people who want to learn about Jesus Christ) seeking an opportunity to grow with other Believers who have experienced the pain of getting caught up in the cycle of addiction. We are Non-Denominational, and welcome anyone seeking recovery through a faith based approach. Please visit our website for meeting times, and instructions on how to participate. Call 206-350-7889.

Website: www.crossroadsphonemeetings.com Gamblers Anonymous Telephone Meeting Conference Call A weekly open meeting for those who are compulsive gamblers, who believe they have a gambling problem and who have a desire to stop gambling. Meets Wed., 9-10:30pm (EST). Dial in up to 15 minutes prior to the start of meeting. Call 559-762-1300 Conference ID: 611704 and then press #.

GAMING ADDICTION

ONLINE | TELEPHONE Gamer Widow Online. Message boards for partners, family and friends of people who play computer games compulsively. Several forums for specific types of games, such as multiplayer online role play, fantasy and action/fighting games. Website: http://www.gamerwidow.com 31

On-Line Gamers Anonymous Online. 12 step fellowship of people sharing their experience, strength and hope in order to help each other recover from the problems caused by excessive and/or obsessive game playing (computer, video, console, online games). Also offers support for families and friends (Olg-Anon). Scheduled separate chat room meetings for gamer and family members, as well as face-to-face meetings.

Literature on starting new groups. Website: http://olganon.org INTERNET ADDICTION

ONLINE | TELEPHONE Crossroads Phone Meetings * Provides Christian support by phone to those who are in recovery. Crossroads is for Christians (or people who want to learn about Jesus Christ) seeking an opportunity to grow with other Believers who have experienced the pain of getting caught up in the cycle of addiction. We are Non-Denominational, and welcome anyone seeking recovery through a faith based approach. Please visit our website for meeting times, and instructions on how to participate. Call 206-350-7889.

Website: www.crossroadsphonemeetings.com The Internet Addiction Support Group Online. Founded 2004. Moderated group which provides a safe place on the web for those who feel addicted to the Internet to share their thoughts, feelings and concerns with one another. A place where loved ones of online addicts can find support, validation and guidance. Focused on the healing that comes through sharing of one’s difficulties in the recovery process.

Sponsored by the Center for Internet Addiction Recovery. Website: http://groups.google.com/group/internet-addiction-support or http://health.groups.yahoo.com/group/internet-addiction and http://netaddiction.com E-mail: internet-addiction-owner@yahoogroups.com OVERWEIGHT | FOOD ADDICTION

ONLINE | TELEPHONE BSCI Telephonic Support Group Telephone. Provides secure, welcoming setting for people who have had, are considering having weight-loss bariatric surgery or who just want to lose weight. Discussions include the latest in bariatric surgery, supplements, and other topics. Registration is not required, just call in. Meets 1st Mon., 8pm (EST); 2nd Tue., 7:30pm (EST); 3rd Thurs., 2pm (EST); 5th Wed., 7pm (EST). Call 712-4329998, enter BSCI Participant Code #602024 (toll charges may apply).

Crossroads Phone Meetings * Provides Christian support by phone to those who are in recovery. Crossroads is for Christians (or people who want to learn about Jesus Christ) seeking an opportunity to grow with other Believers who have experienced the pain of getting caught up in the cycle of addiction. We are Non-Denominational, and welcome anyone seeking recovery through a faith based approach. Please visit our 32

website for meeting times, and instructions on how to participate. Call 206-350-7889.

Website: www.crossroadsphonemeetings.com O-Anon Telephone. 12-step. Fellowship for families and friends of people with eating disorders: bulimia, compulsive overeating and anorexia. Sharing experiences, strengths and hopes with one another while dealing with feelings such as despair felt as loved ones self-destruct. Literature available upon request via mail. Meets Sun., 7pm (EST). Conference call number 712-432-0900. After the prompts, enter the access code 637445 followed by the # sign. Write: PO Box 34642, San Antonio, TX, 78265.

SEX | LOVE ADDICTION

NATIONAL | INTERNATIONAL | MODEL All Addictions Anonymous 12-Step. International. Founded 2003. Mutual support for all addictions including alcohol, drugs, food, sex, smoking and gambling. Write: AAA World GSO, 40 Wickstead Way, Thornhill, ON L3T 5E4, Canada. Call 416-6577771. Website: http://alladdictionsanonymous.org E-mail: info@alladdictions.org

COSA (Codependents of Sex Addicts) International. 50+ affiliated groups. Founded 1980. 12-Step. Program for those whose lives have been affected by someone else’s compulsive sexual behavior. Assistance in starting new groups. Newsletter. Online and telephone meetings. Write: ISO of COSA, 9219 Katy Freeway Suite 212, Houston, TX 77024. Call 1-866-899-2672. Website: http://www.cosa-recovery.org E-mail: info@cosa-recovery.org Overcomers In Christ International. Founded 1987. 100 Chapters. Recovery program that deals with every aspect of addiction and dysfunction (spiritual, physical, mental, emotional and social). Uses Overcomers goals which are Christ-centered.

Resources, literature, information and referrals. Assistance in starting new groups.

Write: Overcomers In Christ, P.O. Box 34460, Omaha, NE 68134. Call 1-866-5730966. Website: http://www.overcomersinchrist.org E-mail: oic@overcomersinchrist.org

Overcomers Outreach, Inc. International. 700 affiliated groups. Founded 1985. 12Step. Christ-centered. Support for anyone affected by addictions, as well as their families and friends. Uses 12-steps of A.A. and applies them to the Scriptures. Uses Jesus Christ as the “higher power”. Supplements involvement in other 12-step groups.

Newsletter, group development guidelines and conferences. Write: Overcomers Outreach, Inc., 12828 Acheson Dr., Whittier CA 90601. Call 1-800-310-3001. Website: http://www.overcomersoutreach.org E-mail: info@overcomersoutreach.org 33

Recoveries Anonymous 12-Step. International. 50 chapters. 12-Step. Spiritual recovery group for anyone seeking a solution for any kind of addiction, problem or behavior. Families and friends welcome. Face-to-face and telephone meetings available. For information go to website and click on the “Meetings” tab or “Contact Us” tab. Free “How To Begin...” guides and “Start A Group” kit can be downloaded from the website. Write: R.A. Universal Services, P.O. Box 1212, East Northport, NY 11731.

Website: http://www.r-a.org E-mail: ra@r-a.org S-Anon International. 280 affiliated groups. Founded 1984. 12-Step. Support group for persons who have a friend or family member with a sexual addiction. Assistance available for starting groups. Local, regional and international conferences. Write: SAnon, P.O. Box 17294, Nashville, TN 37217. Call 1-800-210-8141. Website: http://www.sanon.org E-mail: sanon@sanon.org Sex Addicts Anonymous International. 1,400+ groups. Founded 1977. 12-Step.

Fellowship of men and women who share their experience, strength and hope with each other so they may overcome their sexual addiction or dependency. Open to all who share a desire to stop compulsive sexual dependency. Write: International Service Organization of SAA, P.O. Box 70949, Houston, TX 77270. Call 713-869-4902 or 1-800-477-8191 (Mon.-Fri., 10am-6pm CST). Website: http://www.saarecovery.org E-mail: info@saa-recovery.org Sex and Love Addicts Anonymous International. 1234 affiliated groups. Founded 1976. 12-Step. Fellowship based on A.A. for those who desire to stop living out a pattern of sex and love addiction, obsessive/compulsive sexual behavior or emotional attachment. Newsletter, journal, conferences, phone help, information and referrals.

Write: Fellowship-Wide Services, 1550 NE Loop 410, Suite 118, San Antonio, TX 78209. Call 210-828-7900; Fax: 210-828-7922. Website: http://www.slaafws.org Sexaholics Anonymous International. 700 chapters. Founded 1979. 12-Step.

Program of recovery for those who want to stop their sexually self-destructive thinking and behavior. Mutual support to achieve and maintain sexual sobriety. Phone network, quarterly newsletter, literature and books. Guidelines to help start a similar group.

Write: SAICO, P.O. Box 3565, Brentwood, TN 37024-3565. Call 615-370-6062 or 1866-424-8777; Fax: 615-370-0882. Website: http://www.sa.org E-mail: saico@sa.org Sexual Compulsives Anonymous (BILINGUAL) International. 118+ groups.

Founded 1982. 12-Step. Fellowship of men and women who share their experience, strength and hope that they may solve their common problem and help others to recover from sexual compulsion. Based on the 12-step model of recovery. Newsletter, information and referrals, phone support and conferences. Guidelines for starting 34

similar groups. Write: Sexual Compulsives Anonymous, P.O. Box 1585, Old Chelsea Station, New York, NY 10011. Call 1-800-977-4325. Website: http://www.scarecovery.org Contact via website.

Sexual Recovery Anonymous International. 32 affiliated groups. Founded 1990. 12Step. Fellowship of men and women who share their experience, strength and hope with each other that they may solve their common problem and help others to recover.

For those with a desire to stop compulsive sexual behavior. Online support referrals and literature also available. Write: Sexual Recovery Anonymous, P.O. Box 178, New York, NY 10276. Call 646-450-9690. Website: http://www.sexualrecovery.org Email: info@sexualrecovery.org

ONLINE | TELEPHONE Crossroads Phone Meetings * Provides Christian support by phone to those who are in recovery. Crossroads is for Christians (or people who want to learn about Jesus Christ) seeking an opportunity to grow with other Believers who have experienced the pain of getting caught up in the cycle of addiction. We are Non-Denominational, and welcome anyone seeking recovery through a faith based approach. Please visit our website for meeting times, and instructions on how to participate. Call 206-350-7889.

Website: www.crossroadsphonemeetings.com Porn Addicts Anonymous (PAA) Online. 12-Step. Fellowship for those seeking recovery from an addiction to pornography. Literature and meeting starter packets.

Website: http://www.pornaddictsanonymous.org SMOKING CESSATION

NATIONAL | INTERNATIONAL | MODEL All Addictions Anonymous 12-Step. International. Founded 2003. Mutual support for all addictions including alcohol, drugs, food, sex, smoking and gambling. Write: AAA World GSO, 40 Wickstead Way, Thornhill, ON L3T 5E4, Canada. Call 416-6577771. Website: http://alladdictionsanonymous.org E-mail: info@alladdictionsanonymous.org Nicotine Anonymous World Services International. 500+ groups. Founded 1985.

12-Step. Support program for people who want to recover from nicotine addiction and live free of nicotine in all forms. Welcomes all, including persons using cessation programs and nicotine withdrawal aids. Write: Nicotine Anonymous World Services, 6333 East Mockingbird Lane, Suite 147-817, Dallas, TX 75214. Call 1-877-879-6244.

Website: http://www.nicotine-anonymous.org E-mail: info@nicotineanonymous.org

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Recoveries Anonymous 12-Step. International. 50 chapters. 12-step. Spiritual recovery group for anyone seeking a solution for any kind of addiction, problem or behavior. Families and friends welcome. Face-to-face and telephone meetings available. For information visit website and click on the “Meetings” tab or “Contact Us” tab. Free “How To Begin...” guides and “Start A Group” kit can be downloaded from the website. Write: R.A. Universal Services, P.O. Box 1212, East Northport, NY 11731.

Website: http://www.r-a.org E-mail: ra@r-a.org

ONLINE | TELEPHONE Crossroads Phone Meetings * Provides Christian support by phone to those who are in recovery. Crossroads is for Christians (or people who want to learn about Jesus Christ) seeking an opportunity to grow with other Believers who have experienced the pain of getting caught up in the cycle of addiction. We are Non-Denominational, and welcome anyone seeking recovery through a faith based approach. Please visit our website for meeting times, and instructions on how to participate. Call 206-350-7889.

Website: www.crossroadsphonemeetings.com Smoker’s Helpline Online. Community dedicated to helping people quit smoking. Site provides online support, information on local face-to-face community support groups plus phone help. Website: http://sg.stopsmokingcentre.net/support WhyQuit.com Online. Provides support and education for cold-turkey nicotine cessation. Site provides links to other online support groups that provide help and support to individuals seeking to quit smoking as well as free educational materials.

Website: http://whyquit.com/whyquit/linkskbb.html

BEREAVEMENT

DEATH OF A CHILD | FETAL LOSS

NATIONAL | INTERNATIONAL | MODEL Alive Alone, Inc. National. For parents who have lost an only child or all their children. Provides a mutual support network, wherein newly bereaved parents have the option to network with other more experienced parents after registering for their newsletter. Provides education and publications to promote communication and healing, to assist in resolving grief and to develop means to reinvest lives for a positive future. Bimonthly newsletter and periodic conferences. Write: Alive Alone, P.O. Box 182, Van Wert, OH 45891. Website: http://www.alivealone.org E-mail: alivalon@bright.net 36

Bereaved Parents of the USA (BILINGUAL) National. 80+ affiliated groups.

Founded 1995. Designed to aid and support bereaved parents and their families who are struggling to survive their grief after the death of a child. Information, newsletter, phone support, conferences and support group meetings. Assistance and guidelines in starting groups. Write: Bereaved Parents of the USA, P.O. Box 622, St. Peters, MO 63376. Website: http://www.bereavedparentsusa.org Compassionate Friends, The National. Approximately 600 chapters. Founded 1969.

Offers mutual support, friendship and understanding for families grieving the death of a child of any age, from any cause. Provides information on the grieving process, referrals to local chapter meetings, online support community and publishes tri-annual magazine ($20/yr). Also has a sibling network. Offers “virtual chapters� through an Online Support Community (live chats). Write: The Compassionate Friends, P.O. Box 3696, Oak Brook, IL 60522-3696. Call 1-877-969-0010 (Mon.-Fri., 9am-5pm CST); Fax: 630-990-0246. Website: http://www.compassionatefriends.org E-mail: nationaloffice@compassionatefriends.org

GRASP (Grief Recovery After Substance Passing) National. Founded 2002.

Support and advocacy group for parents and others who have suffered the death of a loved one due to substance use, substance use disorder or overdose. Provides opportunity for people to share their grief and experiences without shame or recrimination. Provides information and suggestions for those wanting to start new chapters across the US. Also has an active online support group on Facebook. Write: GRASP, c/o Denise and Gary Cullen, 42-335 Washington St., Suite F, #175, Palm Desert, CA 92211. Call 714-865-7879 (PST) Website: http://www.grasphelp.org Email: denisecullen@broken-no-more.org MISS Foundation International. 38 affiliated groups. Founded 1995. Offers emergency and on-going support for families before, during and after the death of a child of any age and from any cause. Provides information, referrals, phone support, newsletter, pen pals, literature, advocacy and online chatroom support. Information on local group development. Local support group listings online. Write: The MISS Foundation, 77 E. Thomas Road, Ste 112, Phoenix, AZ 85012. Call 623-979-1000; Fax: 623-979-1001. Website: http://www.missfoundation.org E-mail: joanne@missfoundation.org Parents of Murdered Children, Inc. (POMC) International. Over 230 chapters in the U.S., Canada and Costa Rica. Founded 1978. Support organization for families and friends of those who have died by violence. Newsletter 3 times a year. Court accompaniment also provided by many chapters. Parole Block Program and Second Opinion Service also available. Offers assistance in starting local chapters. Write: 37

Parents of Murdered Children, Inc., 4960 Ridge Ave., Suite 2, Cincinnati, OH 45209.

Call 1-888-818-7662 or 513-721-5683 (Mon.-Fri., 8am-5pm EST); Fax: 513-3454489. Website: http://www.pomc.org E-mail: natlpomc@aol.com Share Pregnancy and Infant Loss Support, Inc. National. 100 chapters. Founded 1977. Mutual support for bereaved parents and families whose lives have been touched by the tragic death of a baby through early pregnancy loss, stillbirth or in the first few months of life. Provides support toward positive resolution of grief experienced at the time of, or following, the death of a baby. Information, education and resources on the needs and rights of bereaved parents, grandparents and siblings. Online newsletter, calendar of upcoming events, helpful hints for caregivers, chapter development opportunities and guidelines available on website. Online message board and chatrooms. Write: Share Pregnancy and Infant Loss Support, Inc., 402 Jackson St., St. Charles, MO 63301. Call 1-800-821-6819; Fax: 636-947-7486. Website: http://www.nationalshare.org E-mail: info@nationalshare.org

ONLINE | TELEPHONE BabyCenter Online. Includes a large variety of online groups providing support and information. Groups include: Getting Pregnant; Pregnancy, Breastfeeding; Birth Clubs; Grief and Loss; High Risk Pregnancy; Preschoolers; Parents of Teens and Tweens; among many others. Website: http://community.babycenter.com/groups Grief Support Online. Provides support and encouragement for anyone grieving the loss of a loved one. Message boards include: loss of child, parent, partner, adult child, family and friends, pet, sibling, loss to suicide, homicide, caregivers and dealing with terminal illness. Website: http://www.forums.grieving.com A Heartbreaking Choice Online. Resource for parents who have had to terminate a wanted pregnancy due to prenatal news such as severe birth defects or risk to the well-being of the mother. Parental stories, private discussion forums, and other related information. Website: http://www.aheartbreakingchoice.net E-mail: info@aheartbreakingchoice.net The Triplet Connection Online. Founded 1983. Support for parents who have lost one or more children in multiple births. Website: http://www.tripletconnection.org/triplet_forum/dcboard.php GENERAL BEREAVEMENT

NATIONAL | INTERNATIONAL | MODEL ACCESS (AirCraft Casualty Emotional Support Services) National network.

Founded 1996. Matches persons who have lost a loved one in an aircraft-related 38

tragedy to volunteers who previously experienced a similar loss. Goal is to help fill the void that occurs when the emergency and disaster relief organizations disband, the initial shock subsides and the natural grieving process intensifies. Offers guidelines to help start a similar group. Persons communicate through e-mail or by phone. Online newsletter. Call 1-877-227-6435. Website: http://www.accesshelp.org E-mail: info@accesshelp.org Association for Pet Loss and Bereavement, The International. Founded in 1987.

Offers support for those who have lost a pet. Chatrooms, list of support groups categorized by state, counselors, pet chaplains, hotlines and coping with euthanasia.

Includes e-cards, newsletters, memoriam, events and training programs. Write: Association for Pet Loss and Bereavement, P.O. Box 55, Nutley, NJ 07110. Call 718382-0690. Website: http://aplb.org E-mail: aplb@aplb.org Beginning Experience, The International. 78 teams. Founded 1974. Christianbased. Support programs for divorced, widowed and separated adults (and their children) enabling them to work through the grief of a lost marriage. Write: The Beginning Experience, c/o International Ministry Center, 1657 Commerce Dr., Suite 2B, South Bend, IN 46628. Call 574-283-0279 or 1-866-610-8877; Fax: 574-283-0287.

Website: http://www.beginningexperience.org E-mail: imc@beginningexperience.org Concerns of Police Survivors, Inc. (C.O.P.S.) National. 54 chapters. Founded 1984. Provides resources for the surviving families of law enforcement officers killed in the line of duty according to Federal criteria. Also offers law enforcement training.

Quarterly newsletter, departmental guidelines and peer support. Provides annual national Police Survivors Conference each May during National Police Week. Special hands-on programs for survivors. Summer camp for children (ages 6-14) and their parent/guardian, parents’ retreats, affected co-worker retreats and spouses get-away.

Outward Bound experiences for young adults (ages 15-20), siblings retreat, adult children and in-laws, fiance/significant other and co-worker retreat. Write: C.O.P.S., P.O. Box 3199, Camdenton, MO 65020. Call 573-346-4911; Fax: 573-346-1414.

Website: http://www.nationalcops.org E-mail: cops@nationalcops.org

GRASP (Grief Recovery After Substance Passing) National. Founded 2002.

Support and advocacy group for parents and others who have suffered the death of a loved one due to substance use, substance use disorder or overdose. Provides opportunity for people to share their grief and experiences without shame or recrimination. Provides information and suggestions for those wanting to start new chapters across the US. Also has an active online support group on Facebook. Write: GRASP, c/o Denise and Gary Cullen, 42-335 Washington St., Suite F, #175, Palm 39

Desert, CA 92211. Call 714-865-7879 (PST) Website: http://www.grasphelp.org Email: denisecullen@broken-no-more.org GriefShare Biblically-based. 13 week support groups for churches to offer to those grieving the death of a loved one. Group members view a video each session, followed by discussion and complete weekly exercises. Workbooks are required for each member. Basic kit $340 (5 workbooks; ministry kit $440 (15 workbooks); total ministry kit $540 (25 workbooks) plus postage. GriefShare meeting locations may be found listed on the website. Write: GriefShare, Church Initiative Inc., P.O. Box 1739, Wake Forest, NC 27588. Call 1-800-395-5755 or 919-562-2112. Website: http://www.griefshare.org E-mail: info@griefshare.org

National Fallen Firefighters Foundation Survivors Support Network National network. Founded 1992. Provides emotional support to spouses, families and friends of firefighters who have died in the line of duty and are honored at the National Fallen Firefighters Memorial in Emmitsburg, MD. Members are matched with survivors of similar experiences to help them cope during the difficult months following the death.

Write: National Fallen Firefighters Foundation, P.O. Drawer 498, Emmitsburg, MD 21727. Call 301-447-1365; Fax: 301-447-1645. Website: http://www.firehero.org (click on Family Resources then click on Survivors Network) E-mail: firehero@firehero.org National Students of Ailing Mothers & Fathers Support Network International.

Network of university students helping each other cope with the serious illness or death of a parent or loved one. Campus-based mutual support groups, online newsletter, online chats and service projects. Website provides information, group development guidelines and a listing of universities currently interested in group development. Write: National Students of AMF Support Network, 3344 Hillsborough St., Suite 260, Raleigh, NC 27607. Call 1-877-830-7442 or 919-803-6728. Website: http://www.studentsofamf.org Parents of Murdered Children, Inc. (POMC) International. Over 230 chapters in US, Canada and Costa Rica. Founded 1978. Support organization for the family and friends of those who have died by violence. Newsletter published 3 times a year. Court accompaniment also provided by many chapters. Parole Block Program and Second Opinion Service also available. Offers assistance in starting local chapters. Write: Parents of Murdered Children, 4960 Ridge Ave, Suite 2, Cincinnati, OH 45209. Call 1-888-818-7662 or 513-721-5683 (Mon.-Fri., 8am-5pm EST); Fax: 513-345-4489.

Website: http://www.pomc.org E-mail: natlpomc@aol.com

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Rainbows For All Children, Inc. International. 4900 affiliated groups. Founded 1983. Establishes peer support groups in faith communities, schools or social service agencies for children and adults who are grieving a death, divorce or other painful transition in their family. Community Crisis and Natural Disaster Curricula also available. Groups are led by trained adults. Online newsletter, information and referrals. Write: Rainbows for All Children, Inc., 1007 Church St., Suite 408, Evanston, IL 60201. Call 847-952-1770; Fax: 847-952-1774. Website: http://www.rainbows.org E-mail: info@rainbows.org Tragedy Assistance Program for Survivors (TAPS) National network. Provides support for persons who have lost a loved one while serving in the armed forces (Army, Air Force, Navy, Marine Corps, National Guard, Reserves, Service Academies, Coast Guard and contractors serving beside the military). Offers networking, crisis information, problem solving assistance and liaison with military agencies. Also has regional and national seminars and youth camps. Write: TAPS, 3033 Wilson Blvd., Suite 630, Arlington, VA 22201. Call 1-800-959-8277 or 202-588-8277; Fax: 202-5098282. Website: http://www.taps.org E-mail: info@taps.org Twinless Twins Support Group International. 12 regional coordinators. Founded 1986. Mutual support for twins and other multiples who have lost their twin or multiple(s) through death or estrangement. Phone support, chatroom, information, local meetings and annual conference. Parents of infant/child survivor twins welcome.

Publishes “Twinless Times.� Dues $50/yr. Write: TTSG, PO Box 980481, Ypsilanti, MI 48198. Call 1-888-205-8962. Website: http://www.twinlesstwins.org E-mail: contact@twinlesstwins.org Wings of Light, Inc. National. 3 support networks. Founded 1995. Support and information network for individuals whose lives have been touched by aviation accidents. Separate networks for airplane accident survivors, families and friends of persons killed in airplane accidents and persons involved in the rescue, recovery and investigation of crashes. Information, referrals and phone support. Website: http://www.wingsoflight.org E-mail: info@wingsoflight.org

ONLINE | TELEPHONE Drowning Support Network Online. 600+ members. Founded 2002. Moderated group offering peer support to those who have lost loved ones in drowning or other aquatic accidents, including cases without physical remains. Water rescue/recovery personnel are also welcome. Promotes prevention programs and water rescue training. Website: http://groups.yahoo.com/groups/drowningsupportnetwork/info Grief Healing Discussion Groups Online. Various interactive support forums for persons grieving the loss of a loved one. Groups include: anticipatory loss, loss of 41

child/grandchild, loss of partner, and many more. Website: http://www.griefhealingdiscussiongroups.com Grief Support Online. Provides support and encouragement for anyone grieving the loss of a loved one. Message boards include: loss of child, parent, partner, adult child, family and friends, pet, sibling, loss to suicide, homicide, caregivers and dealing with terminal illness. Website: http://www.forums.grieving.com Rainbow Bridge - Pet Loss Grief Support Online. Support for persons grieving the loss, or impending loss, of a beloved pet. Message board, chat room, Pet Loss Candle Ceremony, and other resources. Website: http://www.petloss.com SUICIDE SURVIVORS

NATIONAL | INTERNATIONAL | MODEL American Association of Suicidology National. 350 affiliated groups. Referrals to local support groups for survivors of suicide nationwide. Newsletter, pamphlets and brochures available for a fee. Book available on starting self-help groups ($30). Write: American Association of Suicidology, 5221 Wisconsin Ave. NW, 2 nd Floor, Washington, DC 20015. Call 202-237-2280; Fax: 202-237-2282. Website: http://www.suicidology.org E-mail: info@suicidology.org

American Foundation for Suicide Prevention Resource. Founded 1987. Provides state-by-state directory of survivor support groups for families and friends who have lost someone to suicide. Training programs available to start similar groups. Write: American Foundation For Suicide Prevention, 120 Wall St., 29th Floor, New York, NY 10005. Call 1-888-333-2377 or 212-363-3500; Fax: 212-363-6237. Website: http://www.afsp.org E-mail: inquiry@afsp.org Heartbeat International. 35 chapters. Founded 1980. Mutual support for those who have lost a loved one through suicide. Information, referrals, phone support and chapter development guidelines on-line. Speakers on suicide bereavement. Write: Heartbeat, P.O. Box 16985, Colorado Springs, CO 80935-6985. Call 719-596-2575.

Website: http://heartbeatsurvivorsaftersuicide.org E-mail: archlj@msn.com Suicide Anonymous Model. 5 groups. Founded 1996. 12-Step. Fellowship for persons who want to stop their suicidal ideation and behavior, by working the 12-step program. Uses a “Little Book.� Weekly Skype or phone meetings available. Website provides variety of information on how to start a local group. Their website does not provide advice of any kind, but is for informational purposes only and is not intended to be a substitute for professional medical or mental health advice, diagnosis, or

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treatment. Call 901-654-7673 (Information line only). Website: http://www.suicideanonymous.net

ONLINE | TELEPHONE Grief Support Online. Provides support and encouragement for anyone grieving the loss of a loved one. Message boards include: loss of child, parent, partner, adult child, family and friends, pet, sibling, loss to suicide, homicide, caregivers and dealing with terminal illness. Website: http://www.forums.grieving.com Parents Of Suicide-Friends Of Suicide Online. 750+ members. Founded 2000.

Provides online support to anyone grieving the death, by suicide, of someone else.

Offers moderated e-mail mailing list, private chatroom, retreats and various memorial projects. Website: http://www.pos-ffos.com E-mail: arlynsmom@cs.com WIDOWS | WIDOWERS

NATIONAL | INTERNATIONAL | MODEL American Widow Project National network. Mutual support network run by and for widows who have lost a spouse in the military. Provides peer-to-peer and educational support through site, film and events . Call 1-877-297-9436. Website: http://www.americanwidowproject.org E-mail: info@americanwidowproject.org

Beginning Experience, The International. 78 teams. Founded 1974. Christianbased. Support programs for divorced, widowed and separated adults (and their children) enabling them to work through the grief of a lost marriage. Write: The Beginning Experience, c/o International Ministry, Inc., 1657 Commerce Dr., Suite 2B, South Bend, IN 46628. Call 574-283-0279 or 1-866-610-8877; Fax: 574-283-0287.

Website: http://www.beginningexperience.org E-mail: imc@beginningexperience.org Catholic Divorce Ministry International. 3000+ groups. Founded 1974. Religious, educational and emotional aspects of separation, divorce, remarriage and widowhood are addressed through self-help groups, conferences and training programs. Families of all faiths are welcome. Group development guidelines. Newsletter. Membership dues start at $35/yr. (includes newsletter, discounts and resources). Write: Catholic Divorce Ministry - NACSDC, P.O. Box 10, Hancock, MI 49930. Call 1-855-727-2269; Fax: 1-855-729-8751. Website: http://www.nacsdc.org E-mail: office@nacsdc.org Concerns of Police Survivors, Inc. (C.O.P.S.) National. 54 chapters. Founded 1984. Provides resources for the surviving families of law enforcement officers killed in 43

the line of duty according to Federal criteria. Also offers law enforcement training.

Quarterly newsletter, departmental guidelines and peer support. Provides annual national Police Survivors Conference each May during National Police Week. Special hands-on programs for survivors. Summer camp for children (ages 6-14) and their parent/guardian. Parents’ retreats, spouse get-away, Outward Bound experiences for young adults (ages 15-20), siblings retreat, adult children and in-laws, fiance/significant others and co-worker retreats. Write: C.O.P.S., P.O. Box 3199, Camdenton, MO 65020. Call 573-346-4911; Fax: 573-346-1414. Website: http://www.nationalcops.org E-mail: cops@nationalcops.org National Widowers’ Organization National. Founded in 2012. Helps educate widowers and those interested in helping them manage their grief, get through a debilitating time in their lives, and adjust to a new life. Provides information on existing men’s support groups, some of which are professionally-run, provides direction to resources for widowers and publishes a guide for how to develop a men’s self-help group for spousal loss. Also advocates for research into men’s unique needs to deal with grief and spousal loss. Call 1-800-309-3658. Website: http://www.nationalwidowers.org E-mail: info@nationalwidowers.org Single Fathers Due to Cancer Model. 1 group in North Carolina. Founded 2010.

Support for fathers with children who lost their spouses to cancer and have had to adjust to becoming sole parents, as they work through their own grief and that of their children. Offers support, information and resources for fathers (click on “For Fathers”).

This group was started by professionals, who indicate that they will strive to help “create support groups for single fathers due to cancer in areas where there is enough interest” - they invite interested fathers and/or supportive healthcare professionals to contact them. Helps professionals to understand the many challenges and issues that these fathers face (click on “For Professionals”). Website: http://www.singlefathersduetocancer.org E-mail: singlefathersduetocancer@unc.edu Soaring Spirits Loss Foundation National. Develops and runs programs to connect widowed people. Programs include Camp Widow, a weekend of support and learning; Widowed Village, an online community; Widow’s Voice, daily blog posts; Widowed Pen Pal, one-on-one connections. All programs are open to men and women of all ages who have lost their partners. Website: http://soaringspirits.org and E-mail: contact@sslf.org Society of Military Widows National. 24 chapters. Founded 1968. Support and assistance for widows of members of all U.S. uniformed services. Helps people in coping with adjustment to life on their own. Promotes public awareness. Bimonthly magazine/journal. Dues $19/yr. Chapter development guidelines. Online listing of local 44

chapters. Write: Society of Military Widows, 5535 Hempstead Way, Springfield, VA 22151. Call 1-800-842-3451 ext. 1011 or ext. 1003 (day). Website: http://www.militarywidows.org E-mail: ettabrown@yahoo.com

ONLINE | TELEPHONE Grief Support Online. Provides support and encouragement for anyone grieving the loss of a loved one. Message boards include: loss of child, parent, partner, adult child, family and friends, pet, sibling, loss to suicide, homicide, caregivers and dealing with terminal illness. Website: http://www.forums.grieving.com Well Spouse Association - First Friday Formers Telephone. Provides support for those whose spouse or partner is deceased. All WSA Support Group participation requires Supporting Membership dues of $30/yr., but no one is turned away for lack of funds. Meets 1st Fri., 9pm (EST) Contact group facilitator in advance, via the website, for the phone number in which to call. For additional information write: Well Spouse Association, 63 West Main St, Suite H, Freehold, NJ 07728. Call 1-800-8380879. Website: http://www.wellspouse.org/telephone-support-groups2.html Email info@wellspouse.org Widowed Village Online. Support for widows and widowers. Connects peers with each other for friendship and sharing. Discussion forums, blogs, groups, chat room, events, videos, etc. Website: http://www.widowedvillage.org WidowNet Online. 2350 members. Founded 2004. Support and understanding for any widow, widower or person who has suffered the death of a partner. Open to those with recent or remote losses, and regardless of creed, nationality or sexual orientation.

Website: http://health.groups.yahoo.com/group/widownet E-mail: widownetowner@yahoogroups.com or magnolia.bee@gmail.com Young Widow Bulletin Board - Chapter Two Online. Provides a forum for young widows and widowers to connect with others. Exchange experiences, information and support. Provides listing of local support groups also. Website: http://www.ywbb.org or http://www.ywbb.org/supportgroups.shtml

DISABILITIES

AMPUTATION | LIMB DEFICIENCY

NATIONAL | INTERNATIONAL | MODEL

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Amputee Coalition National. 260 affiliated groups. Mission is to reach out to people with limb loss and to empower them through education, support and advocacy.

Maintains the National Limb Loss Information Center which is a comprehensive source of information for people living with limb differences. Helps to start groups. Offers referrals to Amputee Coalition certified peer visitors. Publishes information packet on starting a support group and two magazines, “inMotion” and First Step: A Guide for Adapting to Limb Loss.” Write Amputee Coalition, 9303 Center St., Suite 100, Manassas, VA 20110. Call 1-888-267-5669. Website: www.amputee-coalition.org Email: acainfo@amputee-coalition.org National Amputation Foundation, Inc. National. Founded 1919. Offers support, referrals and information to all amputees. “Amp to Amp” program links individuals with others with similar amputations. Newsletter, information and referrals. Donated medical equipment given to any person in need. Items must be picked up at the office.

Scholarship program open to full-time college students who have a major limb amputation. Write: National Amputation Foundation, 40 Church St., Malverne, NY 11565. Call 516-887-3600; Fax: 516-887-3667. Website: http://www.nationalamputation.org E-mail: amps76@aol.com

ONLINE | TELEPHONE LimbDifferences.org Online. Founded 1981. A comprehensive resource for families and friends of children with limb differences. Establishes contact with other families of children with limb differences through its forum. Website: http://www.limbdifferences.org AUTISM | ASPERGER SYNDROME

NATIONAL | INTERNATIONAL | MODEL Autism Network International International. Founded 1992. Organization run by and for autistic people. Provides peer support, tips for coping and problem-solving. Online listserv, advocacy, education, retreats/conferences, information and referrals. Write: Autism Network International, P.O. Box 35448, Syracuse, NY 13235-5448. Call 315476-2462 (long-distance calls will be returned collect). Website: http://www.autreat.com E-mail: webmaster@autreat.com Autism Society of America National. 103 affiliates. Founded 1965. Dedicated to improving the lives of anyone affected by autism. Provides information and support through its network of affiliates. Offers advocacy, resource information, and national conference. Write: Autism Society of America, 4340 East-West Highway, Suite 350, Bethesda, MD 20814. Call 1-800-328-8476.

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Autistic Self Advocacy Network International. 15 chapters. Founded 2006.

Organization run by and for Autistic persons. Provides support and services to individuals on the autism spectrum. Educates communities. Speakers’ bureau.

Supports research, education and other opportunities for people with autism to engage with others on the autism spectrum. Write: ASAN, P.O. Box 66122, Washington, DC 20035. Call 202-596-1056. Website: http://www.autisticadvocacy.org E-mail: info@autisticadvocacy.org GRASP (Global and Regional Asperger Syndrome Partnership) International. 27 regional and 11 online groups. Founded 2003. Support network for adults and adolescents with a diagnosis on the autism spectrum, Asperger syndrome or pervasive developmental disorder. Newsletter, literature, community advocacy, outreach, education, programming and services, at no cost to its members. Write: GRASP, 419 Lafayette St., New York, NY 10003. Call 1-888-474-7277. Website: http://www.grasp.org E-mail: info@grasp.org

ONLINE | TELEPHONE Down Syndrome and Autistic Spectrum Disorder Online. 1400+ members.

Founded 1997. Opportunity for families and professionals to discuss the unique aspects of supporting a person who is dually diagnosed with Down syndrome and autism-spectrum disorder. Website: http://groups.yahoo.com/group/ds-autism Email: ds-autism-owner@yahoogroups.com Families of Adults Afflicted with Asperger Syndrome Online. Offers support to the family members of adult individuals with Asperger syndrome. Bulletin board, e-mail list and resources. Website: http://www.faaas.org E-mail: faaas@faaas.org GFCF Kids (Gluten-Free and Casein-Free Diets) Online. 15,000+ members.

Founded 1998. Discussion forum for parents of children on the autism spectrum who are avoiding gluten and casein and other substances in their children’s diets. Website: http://health.groups.yahoo.com/group/gfcfkids E-mail: gfcfkidsowner@yahoogroups.com OASIS @ MAAP Online. Interactive webpage providing information and support for Autism and Asperger syndrome and related disorders. 2-day free trial, $35 annual dues. Includes local, national and international support groups, research papers and descriptions. Message boards, chatrooms, research projects, links to evaluators and other Asperger syndrome online resources. Forums for families affected by Asperger syndrome and Autism and the professionals working with them. Website: http://www.aspergersyndrome.org E-mail: info@aspergersyndrome.org Parenting Autism Online. 500+ members. Founded 1999. Support for those parenting a child with autism. Deals with the day-to-day joys and challenges. Website: http://health.groups.yahoo.com/group/parenting_autism Email: parenting_autism-owner@yahoogroups.com 47

BLIND | VISUALLY IMPAIRED

NATIONAL | INTERNATIONAL | MODEL American Council of the Blind National. 72 affiliates. Founded 1961. Aims to improve the well-being of all blind or visually impaired people and their families through education, support and advocacy. National conference, information and referrals, phone support, state and special interest affiliates e.g. guide dog users, blind lawyers, teachers and students. Monthly magazine (available in Braille, half speed cassette, large print, data CD, online or via e-mail; free to members, all others pay $25 per format per year). College scholarships. Online job bank. Chapter development guidelines. Write: American Council of the Blind, 2200 Wilson Blvd., Suite 650, Arlington, VA 22201. Call 1-800-424-8666 or 202-467-5081 (Mon.-Fri., 9am-5pm EST); Fax: 703-465-5085. Website: http://www.acb.org E-mail: info@acb.org Blinded Veterans Association National. 54 regional groups. Founded 1945.

Support, information and outreach to blinded veterans including those who were blinded in combat and those suffering from age-related macular degeneration and other eye diseases. Help in obtaining prosthetic devices and accessing the latest technological advances to assist the blind. Information on benefits and rehabilitation programs. Quarterly newsletter. Regional meetings. Write: BVA, 477 H St. NW, Washington, DC 20001. Call 1-800-669-7079 or 202-371-8880; Fax: 202-371-8258.

Website: http://www.bva.org E-mail: bva@bva.org Council of Citizens with Low Vision International International. Founded 1979.

Encourages low vision people to make full use of vision through use of equipment, technology and services. Education, advocacy, quarterly magazine, group development guidelines, scholarships, conferences, information and referrals. Write: Council of Citizens with Low Vision International, 2200 Wilson Blvd., Suite 650, Arlington, VA 22201. Call 1-800-773-2258. Website: http://www.cclvi.org E-mail: president@cclvi.org Jewish Guild Healthcare National. Founded 1914. Support for persons of all ages who are visually impaired, blind and those with additional disabilities. Telephone support network brings together parents from around the country whose children have the same condition (Retinopathy of Prematurity, Retinitis Pigmentosa, Cortical Visual Impairment, Leber Congenital Amaurosis CHARGE Syndrome, Hermansky Pudlak Syndrome, Autism Spectrum Disorders, Albinism, a group for siblings, and a group for blind teenagers planning to attend college) to speak with parents in the same situation.

Newsletter and literature available on the website or in hard copy. Write: The Jewish Guild Healthcare, 15 West 65th Street, New York, NY 10023. Call 1-800-284-4422 or 48

212-769-7800. For direct information on the tele-support network call Dan Callahan 212-769-7815. Website: http://www.guildhealth.org E-mail: info@guildhealth.org Macular Degeneration Partnership Regional. 3 groups. Provides support, information and resources for individuals with (AMD) Age-related Macular Degeneration, a progressive eye condition that destroys all central vision. Family members and caregivers welcome. Online information, toll-free “warmline�, AMD Toolkit of large-print information, booklets, resources and monthly e-newsletter with updates about research and treatment. Provides help with starting local support groups. Write: Macular Degeneration Partnership, 6222 Wilshire Blvd., Suite 260, Los Angeles, CA 90048. Call 310-623-4466; Fax 310-623-1837. Website: http://www.amd.org E-mail: contactus@amd.org Massachusetts Association for the Blind and Visually Impaired National. 34 groups. Founded 1903. Support network for persons coping with sight loss. Sponsors support groups for elders and mixed ages. Outreach services and community volunteers. Write: Massachusetts Association for the Blind and Visually Impaired, 200 Ivy St., Brookline, MA 02446. Call 617-738-5110; Fax: 617-738-1247. Website: http://www.mabcommunity.org MD Support: The Eyes of the Macular Degeneration Community International.

134 chapters/affiliated groups. Founded 1995. Provides information and support for people who are affected by macular degeneration and similar retinal diseases. Large informational website, monthly webcasts, email discussion group, message board, telephone and live support groups, telephone help line. Write: MD Support, 3600 Blue Ridge Blvd., Grandview, MO 64030. Call 1-888-861-6148 or 816-761-7080. Website: http://www.mdsupport.org E-mail: director@mdsupport.org National Federation of the Blind National. 52 affiliates. Founded 1940. Serves as both an advocacy and a public information vehicle. Provides support and information on services and applicable laws. Student scholarships. Assists blind persons who are victims of discrimination. Literature, monthly meetings and magazine. Assistance in starting new groups. Write: National Federation of the Blind, 200 E. Wells St., Baltimore, MD 21230. Call 410-659-9314; Fax: 410-685-5653. Website: http://www.nfb.org E-mail: nfb@nfb.org National Keratoconus Foundation National network. Founded 1986. Provides information and support to persons with keratoconus, an eye condition where the cornea progressively thins causing a cone-like bulge. Electronic newsletters, phone support, information and referrals. Online support group. Encourages research into cause and treatment. Write: National Keratoconus Foundation, 6222 Wilshire Blvd., Suite 260, Los Angeles, CA 90048. Call 1-800-521-2524; Fax: 310-623-1837.

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Website: http://www.nkcf.org E-mail: info@nkcf.org

National Organization of Parents of Blind Children National. 25 chapters.

Founded 1983. Serves as both an advocacy and public information vehicle. Provides information on services available. Offers positive philosophy and insights into blindness and practical guidance in raising a blind child. “Future Reflections” magazine, parent seminars, free parents’ information packet, meetings and conventions. Dues $8. Write: National Organization of Parents of Blind Children, National Federation of the Blind, 200 East Well St., Baltimore, MD 21230. Call 410659-9314 ext. 2287; Fax: 410-685-5653. Website: http://www.nfb.org/about-nopbc E-mail: nfb@nfb.org

ONLINE | TELEPHONE Congenital Glaucoma Network, The Online. Founded 2011. Provides support, facilitates discussion and promotes awareness of congenital and childhood glaucoma internationally. Website: http://congenitalglaucomanetwork.com Leber’s Congenital Amaurosis eGroup Online. 841 members. Founded 1999.

Provides a listserv for everyone interested in sharing and sourcing information relating to this genetic disorder. Website: http://groups.yahoo.com/group/lca E-mail: lcaowner@yahoogroups.com Pars Planitis Forum Online. Provides support via an online forum for parents of children with Pars planitis (intermediate uveitis), an inflammatory eye disease that is potentially blinding. Website: http://parsplanitisforum.yuku.com Uveitis Online Support Group Online. Provides support via a discussion board for anyone living with ocular inflammatory disease. Provides information on coping to enhance your repertoire of coping skills so you can take control of your inflammatory eye disease. Website: http://uveitissupport.yuku.com BRAIN INJURY | BRAIN TUMOR | COMA

NATIONAL | INTERNATIONAL | MODEL A Kids’ Brain Tumor Cure Foundation International. Founded 2007. Support for families and caregivers of children battling all tupes of brain tumors, including the most common forms, pediatric low grade astrocytomas. Offers patient driven online support network through Yahoo, listserv, Facebook, e-mail discussion group, phone support and international conferences. How-to materials for starting a support group are provided on website. Write: A Kids Brain Tumor Cure Foundation, 98 Random Farms Dr., Chappaqua, NY 10514. Call 914-762-3494. Website: http://www.fightplga.org Email: contact@fightplga.org 50

Acoustic Neuroma Association National. 53 affiliated groups. Founded 1981.

Support and information for patients who have been diagnosed with acoustic neuroma, a benign tumor affecting the 8th cranial nerve. Quarterly newsletter ($45/yr.), nationwide support group network, biennial national symposium and patient information booklets. Write: Acoustic Neuroma Association, 600 Peachtree Parkway, Suite 108, Cumming, GA 30041-6899. Call 1-877-200-8211 or 770-205-8211; Fax: 1877-202-0239. Website: http://www.anausa.org Brain Injury Association of America National. 26 state associations. 600 affiliated groups. Founded 1980. Advocacy organization providing services to persons with brain injuries, their families and professionals. Increases public awareness through state associations, support groups, information and resource network, seminars, conferences, literature and prevention programs. Guidelines for starting similar groups.

Write: Brain Injury Association, 1608 Spring Hill Road, Suite 110, Vienna, VA 22182.

Call 1-800-444-6443 (National Brain Injury Information Center) or 703-761-0750; Fax: 703-761-0755. Website: http://www.biausa.org E-mail: braininjuryinfo@biausa.org Children’s Brain Tumor Foundation, Inc. (BILINGUAL) National network. Founded 1988. Provides a family-to-family network to link parents of a child with a brain or spinal cord tumor with another parent with similar experiences for information and support. Offers free resource guide (English/Spanish), “Parker’s Brain Storm” (a book for children), Brain Tumor Family Camps, Teen and Young Adult Heads Up Conferences at Camp Make-A-Dream, newsletter, annual teleconferences (available for replay on website) and funds research. Write: Children’s Brain Tumor Foundation, 274 Madison Ave., Suite 1004, New York, NY 10016. Call 1-866-228-4673 or 212-4489494 (Mon.-Fri., 9am-5pm EST); Fax: 212-448-1022. Website: http://www.cbtf.org Email: info@cbtf.org Musella Foundation National. Provides emotional support and exchange of information for patients with various brain tumors and their families. Information on research, medication and clinical trials. Co-payment assistance program for glioblastoma multiforme patients. Chatrooms, support groups, video library and other resources. Website: http://www.virtualtrials.com E-mail: musella@virtualtrials.com National Brain Tumor Society National. Support and information for persons with brain tumors and their loved ones. Provides funding for research as well as client services for brain tumor patients and family members. Offers support group and treatment center listings, a monthly e-newsletter, conferences, literature, Patient Services Line, an online community, webinars, information and referrals. Assistance in starting and maintaining support groups. Write: National Brain Tumor Society, 124 51

Waterton St., Suite 2D, Boston, MA 02472. Call 617-924-9997; Fax: 617-924-9998.

Website: http://www.braintumor.org E-mail: info@braintumor.org BURN SURVIVORS

NATIONAL | INTERNATIONAL | MODEL Amish and Mennonite Burn Survivor Support Group Model. Support for Amish and Mennonite burn victims. For further information and if you would like to start a group in your area contact Troy Slabaugh. Call 330-492-4089. Write: Capt. Troy Slabaugh, c/o Plain Twp Fire Dep’t, 1742 Schneider St., Canton, OH 44721. E-mail tslabaugh@plaintownship.com Burn Survivors Throughout the World, Inc. International Resource. 4 groups.

Founded 2001. Offers a peer support team, educational materials, healing weekends, quarterly newsletters, telephone support network and conferences. Provides online and face-to-face support for burn survivors and family members, online support via message board, mailing lists and scheduled and emergency real-time audio/video chat meetings and an online community. Assists people in starting a local support group for burn survivors. Write: Burn Survivors Throughout the World, Inc., 16193 Lone Star Ranch Drive #102, Conroe, TX 77302. Call 936-483-9014; Fax: 936-5701179. Website: http://www.burnsurvivorsttw.org; Online Community: http://www.burnsurvivorsttw.org/community E-mail: info@burnsurvivorsttw.org The Phoenix Society for Burn Survivors, Inc. International. Founded 1977.

Mission is to uplift and inspire anyone affected by burns through peer support, collaboration, education and advocacy. Includes support services, referrals and thriceyearly newsletter “Burn Support News.” SOAR Peer Support Program, annual World Burn Congress, family services, toll-free information and referral line, online chat sessions, advocacy and educational programs. Write: The Phoenix Society, 1835 RW Berends Dr. SW, Grand Rapids, MI 49519. Call 1-800-888-2876 or 616-458-2773; Fax: 616-458-2831. Website: http://www.phoenix-society.org E-mail: info@phoenix-society.org CEREBRAL PALSY

NATIONAL | INTERNATIONAL | MODEL United Cerebral Palsy National. 140 affiliates. Founded 1949. Supports local affiliates that run programs for individuals with cerebral palsy and other disabilities.

Local programs include support groups for parents and adults with cerebral palsy.

Advocacy, research reports, referrals and information packets. Write: United Cerebral Palsy, 1825 K St. NW, Suite 600, Washington, DC 20006. Call 1-800-872-5827; Fax: 52

202-776-0414. Website: http://www.ucp.org E-mail: info@ucp.org DEAF | HEARING IMPAIRED | TINNITUS | MENIERE’S

NATIONAL | INTERNATIONAL | MODEL American Tinnitus Association National. 100 groups. Founded 1971. Provides support, information, education and advocacy for persons affected by tinnitus. Funds research. Dues $40/yr membership ($55 outside the U.S.) includes “Tinnitus Today” magazine. Write: American Tinnitus Association, P.O. Box 5, Portland, OR 97207. Call 1-800-634-8978 or 503-248-9985 (Mon.-Fri., 8:30am-4:30pm PST). Website: http://www.ata.org E-mail: tinnitus@ata.org Hearing Loss Association of America International. 200 chapters and groups.

Founded 1979. Aim is to open the world of communication to people with hearing loss by providing support, information, education, referrals and advocacy. Assistance in starting groups. Write: Hearing Loss Association of America, 7910 Woodmont Ave., Suite 1200, Bethesda, MD 20814. Call 301-657-2248; Fax: 301-913-9413. Website: http://www.hearingloss.org GENERAL DISABILITIES | SPINAL CORD INJURY

NATIONAL | INTERNATIONAL | MODEL National Spinal Cord Injury Association (A Program of the United Spinal Association) National. 44 chapters and 160 support groups nationally. Founded 1948.

Provides information and referrals on many topics to persons with spinal cord injuries and diseases, their families and interested professionals. Group development guidelines, monthly newsletter, bi-monthly edition of ‘Life in Action’(published in both hard copy and electronic format), support groups and peer counseling. Online listing of local chapters. Write: National Spinal Cord Injury Association, 12034 Queens Blvd., Suite 320, Kew Gardens, NY 11415. Call 1-800-962-9629 (Mon.-Fri., 8:30am-5pm EST). Website: http://www.unitedspinal.org E-mail: info@unitedspinal.org Paralyzed Veterans of America National. 34 chapters and 58 field service offices.

Aim is to ensure that spinal cord injured or diseased veterans achieve the highest quality of life possible. Membership is available solely to individuals who are American citizens with spinal cord dysfunction as a result of trauma or disease. Must have served on active duty and had an other than dishonorable discharge. Support groups, publications, VA benefits counseling, magazine, information and referrals. Write: Paralyzed Veterans of America, 801 18th St. NW, Washington, DC 20006. Call 1-800-

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424-8200 or 202-872-1300 (Mon.-Fri., 9am-5pm EST). Website: http://www.pva.org E-mail: info@pva.org Project DOCC (Delivery Of Chronic Care) International. 28 chapters. Founded 1994. Provides education regarding the impact of chronic illness and/or disability on a family. Information, referrals, phone support, e-mail correspondence and “how-to� guides on developing a local group. Write: Project DOCC, 18 Dunster Rd., Great Neck, NY 11021. Website: http://projectdocc.org E-mail: projectdocc.national@gmail.com Sibling Support Project National. 400 affiliated groups. Founded 1990. Organization dedicated to the life-long concerns of brothers and sisters of people with special health, developmental and mental health concerns. Provides workshops on sibling issues, hosts listservs and provides training on how to implement Sibshops (lively workshops for school-age siblings). Write: Sibling Support Project, c/o Donald Meyer, 6512 23rd Ave. NW, Seattle, WA 98117. Call 206-297-6368. Website: http://www.siblingsupport.org E-mail: donmeyer@siblingsupport.org United Spinal Association National. 28 chapters. Founded 1946. Aim is to provide support and improve the quality of life for all Americans with spinal cord injuries and disorders. Write: United Spinal Association, 75-20 Astoria Blvd., Jackson Heights, NY 11370-1177. Call 718-803-3782 ext. 7203. Website: http://www.spinalcord.org

ONLINE | TELEPHONE Cauda Equina Syndrome Support Group (CESSG) Online. Founded in 1999. 120+ members. Provides mutual support for individuals with Cauda Equina Syndrome (CES), a neurological condition regarded as a form of spinal cord injury. Site has a chat-room, message board and information on illness. Website: http://caudaequina.org/chat.html Email: cessgboard@yahoo.com Quad-List Online. Provides a forum for quadriplegics (tetraplegics) to support and communicate with others who share the same condition. Not strictly a SCI (spinal cord injury) forum. Forum is for anyone who suffers a partial or full loss of function of all four extremities of the body. Website: http://www.makoa.org/quadlist.htm or http://www.facebook.com/quadlist E-mail: jlubin@eskimo.com (Jim Lubin) Regard Online Online. Founded 1989. A UK-based organization of lesbian, gay, bisexual and transgender (LBGT) people who are disabled. Offers information, suggestions and social contact for members through online groups. Provides advocacy and campaigns on issues affecting disabled LBGT people. Provides online newsletters, news and notices. Website: http://www.regard.org.uk or

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http://facebook.com/#!/group.php?gid=131451632773 and http://uk.groups.yahoo.com/group/regardonline E-mail: secretary@regard.org.uk INTELLECTUAL DISABILITIES | DOWN SYNDROME

NATIONAL | INTERNATIONAL | MODEL The Arc National. Over 700 chapters. Founded 1950. Provides support for people with intellectual and developmental disabilities and their families. Advocacy groups and direct services. Monthly e-newsletter. Chapter development guidelines. Local group information on website. Write: The Arc, 1825 K Street NW, Suite 1200, Washington, DC 20006. Call 202-534-3700 (day); Fax: 202-534-3731. Website: http://www.thearc.org E-mail: info@thearc.org Dads Appreciating Down Syndrome (D.A.D.S.) International. 61 chapters. Assists and supports, through fellowship and action, the fathers and families of individuals with Down syndrome. Education, guest speakers and any other issues that affect children’s lives. Share stories and experiences that are unique to fathers of children’s lives.

Assists those fathers interesting in joining with others to start a new chapter in any unserved areas. Write: D.A.D.S., PO Box 3556, Carmel, IN 46082. Website: http://www.dadsnational.org/chapters E-mail: joemeares@dadsnational.org National Down Syndrome Congress National. Founded in 1973. Support for individuals with Down syndrome, their families and the professionals who work with them. Provides information, advocacy and support concerning all aspects of life for individuals with Down Syndrome. Write: NDSC, 30 Mansell Court, Suite 108, Roswell, GA 30076. Call 1-800-232-6372; Fax: 770-604-9898. Website: http://ndsccenter.org E-mail: info@ndsccenter.org People First Model. 30 groups in Washington. 7 high school clubs. Founded 1977.

Self-help advocacy organization created by and for people with developmental disabilities. Provides help in starting new chapters. Monthly e-newsletter called Chapter Chatter. Write: People First, 932 ½ 6th St., P.O. Box 648, Clarkston, WA 99403. Call 1-800-758-1123. Website: http://www.peoplefirstofwashington.org The Rainbow Support Group (RSG) Model. 3 groups (throughout New England).

Founded 1998. Support group for gay, lesbian, bisexual and transgender people with developmental disabilities. Call: 203-387-2252 (New Have Pride Center Main Number) Write: Rainbow Support Group, c/o New Haven Pride Center, 84 Orange St., New Haven, CT 06510. Listserv: rainbowsupport-subscribe@yahoogroups.com Website: https://sites.google.com/site/rainbowdisability/home E-mail: rainbowsupport-owner@yahoogroups.com or RainbowDisability@gmail.com

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ONLINE | TELEPHONE Down Syndrome and Autistic Spectrum Disorder Online. 1400+ members.

Founded 1997. Opportunity for families and professionals to discuss the unique aspects of supporting a person who is dually diagnosed with Down syndrome autism spectrum disorder. Website: http://groups.yahoo.com/group/ds-autism E-mail: dsautism-owner@yahoogroups.com Regard Online Online. Founded 1989. A UK-based organization of LGBT people who self-identify as disabled. Follows the social model of disability. Offers information, advice (on a non-professional basis) and social contact for members through online groups. Provides advocacy and campaigns on issues affecting disabled LBGT people.

Provides online newsletters, news and notices. Website: http://www.regard.org.uk or http://facebook.com/#!/group.php?gid=131451632773 and http://uk.groups.yahoo.com/group/regardonline E-mail: secretary@regard.org.uk LEARNING DISABILITY | ATTENTION DEFICIT DISORDER

NATIONAL | INTERNATIONAL | MODEL ADDA (Attention Deficit Disorder Association) National network. Founded 1989.

Mission is to provide information, resources and networking to adults with attention deficit hyperactivity disorder (ADHD) and to the professionals working with them. Aims to generate hope, awareness, empowerment and connections worldwide in the field of ADHD through bringing together science and the human experience. The information and resources provided to individuals and families affected with ADHD focus on diagnosis, treatment, strategies and techniques for helping adults with ADHD lead better lives. Membership $50/yr. (individual); $55/yr. (family); $150/yr. (professional).

Write: ADDA, P.O. Box 103, Denver, PA 17517. Call 1-800-939-1019. Website: http://www.add.org E-mail: info@add.org

CHADD (Children and Adults with Attention-Deficit/Hyperactivity Disorder) (BILINGUAL) International. Founded 1987. Support network for individuals, parents and caregivers of children with attention deficit/hyperactivity disorder. Provides information for parents, adults, teachers and professionals. Bimonthly magazine and annual conference. Dues $49; student $38; healthcare professionals $120; organizations $325. Online listing of local support groups. Write: CHADD, 8181 Professional Place, Suite 150, Landover, MD 20785. Call 1-800-233-4050 or 301-3067070 (day); Fax: 301-306-7090. Website: http://www.chadd.org

ONLINE | TELEPHONE

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ADD Connect Online. Community offering support and education for anyone affected by attention deficit disorder. Online groups include: adults with ADD, parents, couples, women, professionals, treatments, ADD and depression or anxiety, and many more.

Also offers webinars, ADDitude e-newsletter, YouTube videos, resources, literature and Facebook page. Website: http://addconnect.com Conduct Disorders Parent Message Board Online. 7080 members. Founded 1995.

Support for parents of a child with one of the many behavior disorders such as attention deficit hyperactivity disorder, oppositional defiance disorder, bipolar disorder, conduct disorder, depression, anxiety and substance abuse. Parents of children all ages welcome. Website: http://www.conductdisorders.com SPEECH | STUTTERING

NATIONAL | INTERNATIONAL | MODEL International Foundation for Stutterers, Inc. International. Founded 1980. Aims to eliminate stuttering through speech therapy in conjunction with support groups.

Education for public and professionals about stuttering and support. Speakers, phone help system and guidelines on forming support groups. Write: International Foundation for Stutterers, 2414 Romano Court, East Norristown, PA 19401. Call Elliot Dennis 610272-1771 or Ed Riordan 908-359-6469 (eve.). E-mail: elliotdennis@yahoo.com National Stuttering Association National. 100+ groups. Founded 1977. Provides information about stuttering. Self-help chapter meetings provide supportive environment where people who stutter can learn to communicate more effectively.

Network of groups. Referrals, advocacy, monthly newsletter and group development guidelines. Write: National Stuttering Association, 119 West 40th St., 14th Floor, New York, NY 10018. Call 1-800-973-8888. Website: http://www.westutter.org E-mail: info@westutter.org Toastmasters International International. 13,500+ chapters. Founded 1924. Mutual help for people to improve speaking and leadership skills to express themselves more effectively and to gain confidence. For those who are hesitant to speak before an audience. Leadership training. Dues $72/yr. One time membership kit $20. Monthly magazine. Write: Toastmasters International, P.O. Box 9052, Mission Viejo, CA 92690-7052. Call 949-858-8255 (Mon.-Fri., 8am-5pm PST); Fax: 949-858-1207.

Website: http://www.toastmasters.org E-mail: tminfo@toastmasters.org

FAMILY | PARENTING

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ADOPTION

NATIONAL | INTERNATIONAL | MODEL Adoption Crossroads International. 475 affiliated groups. Founded 1986. Mutual support for persons separated by adoption. Referrals to adoption search and support groups. Newsletter, phone support and conferences. Provides information and referrals to support group meetings. Assistance in starting groups. Write: Adoption Crossroads, c/o Joe Soll, 74 Lakewood Dr., Congers, NY 10920. Call 845-268-0283; Fax: 845-267-2736. Website: http://www.adoptioncrossroads.org E-mail: info@adoptioncrossroads.org

Concerned United Birthparents, Inc. National. 11 branches. Founded 1976.

Support for adoption-affected people in coping with adoption. Prevention of unnecessary separations. Dues $40/yr. Online chatroom, quarterly newsletter, pen pals and phone network. Provides assistance in starting local groups. Write: CUB, P.O. Box 5538, Sherman Oaks, CA 91413. Call 1-800-822-2777; Fax: 858-712-3317.

Website: http://www.cubirthparents.org E-mail: info@cubirthparents.org Korean American Adoptee Adoptive Family Network International. Mission is to support networking and build understanding among adoptees, adoptive families, Koreans and Korean Americans. Annual conference and year-round newsletter. Write: KAAN, P.O. Box 714, Camp Hill, PA 17001. Call 717-574-3629. Website: http://www.kaanet.org E-mail: stacy@kaanet.org North American Council on Adoptable Children International. Founded 1974.

Focuses on special needs adoptions as well as children in foster homes. Provides referrals, maintains listing of adoptive parent support groups which conduct a wide range of activities, and helps new groups to start. Sponsors annual conference which features workshops for adoptive parents, prospective parents, foster parents, childcare professionals and other child advocates. Newsletter. Membership dues $45. Parent group manual free online. Write: NACAC, 970 Raymond Ave., Suite 106. St. Paul, MN 55114-1149 Website: http://www.nacac.org E-mail: info@nacac.org CAREGIVERS | FAMILIES OF NURSING HOME RESIDENTS

NATIONAL | INTERNATIONAL | MODEL The Caregiver Action Network National. Founded 1992. Dedicated to improving the quality of life for family caregivers through support and validation, education, 58

information, public awareness and advocacy. Information and referrals, quarterly newsletter, resources and literature. Write: Caregiver Action Network, 2000 M St. NW, Suite 400, Washington, DC 20036. Website: http://www.caregiveraction.org E-mail: info@caregiveraction.org Well Spouse Association International. Founded 1988. Provides emotional support to spousal caregivers of the chronically ill and/or disabled through support groups, telephone support groups, round robins, mentor programs, online chat forum, respite weekends, national conference and quarterly e-newsletter and a quarterly Mainstay newsletter. Dues $30/yr. but minimum $5 for financial hardship cases. Guidelines and assistance available for starting new groups. Write: Well Spouse Association, 63 West Main St., Suite H, Freehold, NJ 07728. Call 1-800-838-0879 or 732-577-8899 (Mon.Thurs., 9am-3pm EST); Fax: 732-577-8644. Website: http://www.wellspouse.org Email: info@wellspouse.org

ONLINE | TELEPHONE CancerCare Telephone Support Group for Caregivers * Professionally-run.

Provides support for caregivers of those diagnosed with cancer. Meetings weekly, call for more details. Program is free, pre-registration is required. Call Rick Dickens, LCSW 212-712-6126. E-mail: rdickens@cancercare.org.

Caregiver Online Group Online. Support for caregivers, families and partners of adults with disorders such as Alzheimer’s, stroke, brain injury and other chronic debilitating health conditions. Offers a safe place to discuss the stresses, challenges and rewards of providing care for a loved one. Website: http://www.caregiver.org Family Caregivers of Older Adults Telephone. Provides support for caregivers of older adults. Meets 2nd Tues. Registration is required. Register on website for phone-in number and access code. For additional information call Michelle Smith 703-324-5484, TTY 711. Website: http://tinyurl.com/CaregiverTSG E-mail Michelle.Smith2@fairfaxcounty.gov Well Spouse Association - Current Well Spouses Telephone. Support for current well spouses who live a life of uncertainty with their ill partner. The illness can be very unforgiving and can intrude upon their spousal relationship at any time. All WSA support group participation requires Supporting Membership dues of $30/yr., but no one is turned away for lack of funds. Meets 4th Sat., 9pm (EST) Contact Group fasciliator in advance, via the website, for the phone number in which to call. For additional information write: Well Spouse Association, 63 West Main St, Suite H, Freehold, NJ 07728. Call 1-800-838-0879. Website: http://www.wellspouse.org/telephone-support-groups.html Email info@wellspouse.org

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Well Spouse Association - Current Younger Well Spouses Telephone. (45 and under) Support for young spouses who are caregivers. Open to Spouses and partners.

1st month Phone Discussion -- 2nd month WSA Chat Line. All WSA Support Group participation requires Supporting Membership dues of $30/yr., but no one is turned away for lack of funds. Meets 1st Fri., 9pm (EST) Contact group facilitator in advance, via website, for the phone number in which to call, or which Chat Room in which to go. For additional information write: Well Spouse Association, 63 West Main St, Suite H, Freehold, NJ 07728. Call 1-800-838-0879. Website: http://www.wellspouse.org/telephone-support-groups3 Email info@wellspouse.org Well Spouse Association - Holistic Spousal Support Telephone. Provides mental, emotional and spiritual support for spousal caregivers in an educational, confidential and spiritual environment. It will assist well spouses in dealing with grief, shame and anger and the many issues that come along with caregiving. All WSA Support Group participation requires Supporting Membership dues of $30/yr., but no one is turned away for lack of funds. Meets 1st and 3rd Wed. 8pm (EST). For additional information write: Well Spouse Association, 63 West Main St, Suite H, Freehold, NJ 07728. Call 1712-432-3066 and use conference code 424749 to log in. Website: http://www.wellspouse.org E-mail info@wellspouse.org Well Spouse Association - Separate Lives Telephone. Provides support for those whose ill spouse or partner is separated / divorced / living in nursing home. All WSA Support Group participation requires Supporting Membership dues of $30/yr., but no one is turned away for lack of funds. Meets 1st Mon., 9 pm (EST) Contact group facilitator in advance, via the website, for the phone number in which to call. For additional information write: Well Spouse Association, 63 West Main St, Suite H, Freehold, NJ 07728. Call 1-800-838-0879. Website: http://www.wellspouse.org/telephone-support-groups5.html Email info@wellspouse.org CESAREAN BIRTH

NATIONAL | INTERNATIONAL | MODEL ICAN, Inc. (International Cesarean Awareness Network) International. Support for women healing from Cesarean birth. Encouragement and information for those wanting vaginal birth after previous Cesarean. Aims to lower the high Cesarean rate through prevention and education. Newsletter. Chapter development guidebook. Call 1-800-686-4226. Write: ICAN Inc., PO Box 573, Glen Alpine, North Carolina 28628.

Website: http://www.ican-online.org E-mail: info@Ican-online.org CHILDBIRTH | BREASTFEEDING

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NATIONAL | INTERNATIONAL | MODEL La Leche League International. 3500 groups. Founded 1956. Support and education for breastfeeding mothers. Group discussions, personal help, classes and conferences. Publishes literature on breastfeeding and parenting. Bi-monthly newsletter and phone support network. Assistance with starting new groups. Write: La Leche League International, 957 North Plum Grove Rd., Schaumburg, IL 60173. Call 1-800-525-3243 or 847-519-7730 (Mon.-Thurs., 9am-5pm CST); Fax: 847-969-0460.

Website: http://www.lalecheleague.org National Association of Mothers’ Centers National. 30 sites. Founded 1975.

Support, local discussion groups, activities regarding parenting, pregnancy, childbirth and work/life issues. Plus webinars and parenting blog on website. National and some local newsletters, conference and advocacy. Has up-to-date information on contacting local Mothers’ Center programs, starting a center. Write: National Association of Mothers’ Centers, 1740 Old Jericho Turnpike, Jericho, NY 11753. Call 1-877-939-6667 or 516-939-6667; Fax: 516-750-5365. Website: http://www.motherscenter.org Email: info@motherscenter.org Sidelines High Risk Pregnancy Support International network. Founded 1991.

Provides support network for mothers with high-risk pregnancies and their families.

Also, links together mothers of babies born premature. For either network (click on “Request Support” or phone). Emotional support available via email, phone, and message boards. Also provides educational resources, and works on needed advocacy efforts. Write: Sidelines National Support Network, P.O. Box 1808, Laguna Beach, CA 92652. Call 1-888-447-4754; Fax: 949-497-5598. Website: http://www.sidelines.org E-mail: sidelines@sidelines.org

ONLINE | TELEPHONE BabyCenter Online. Includes a large variety of online groups providing support and information. Groups include: Getting Pregnant; Pregnancy, Breastfeeding; Birth Clubs; Grief and Loss; High Risk Pregnancy; Preschoolers; Parents of Teens and Tweens; among many others. Website: http://community.babycenter.com/groups Preeclampsia Foundation Online. Organization dedicated to providing support, funding research, raising public awareness and education for those whose lives have been touched by preeclampsia and other hypertensive disorders while pregnant.

Forums. Website: http://www.preeclampsia.org FOSTER PARENTS | CHILDREN

NATIONAL | INTERNATIONAL | MODEL 61

Fostered Adult Children Together (FACT) Model. 1 group in MI. Founded 1999.

Provides mutual support for former foster children. Literature. Provides assistance in starting similar groups. Write: FACT, c/o Carol Lucas, 226 S. Burkhart Rd., Howell, MI 48843. Call 517-546-7818 (voice/fax). Website: http://www.factsupportgroup.com E-mail: carolannlucas@hotmail.com

National Foster Parent Association, Inc. National. 50 affiliated groups. Founded 1972. Support, education and advocacy for foster parents and their children. Resource center for foster care information. Quarterly newsletter, annual national conference and workshops. Chapter development guidelines. Write: National Foster Parent Association, 1202 Westrac Dr., Suite 400, Fargo, North Dakota 58103. Call 1-800-5575238. Website: http://www.nfpaonline.org E-mail: info@nfpaonline.org

ONLINE | TELEPHONE FosterClub Online. Support for young people in the foster care system to connect in a safe monitored environment. Information relating to foster care, message boards, social networking, publications, teen conference and workshops. Website: http://www.fosterclub.com MARRIAGE | FAMILY

NATIONAL | INTERNATIONAL | MODEL Better Marriages National network. Founded 1973. Membership network of couples who want to enhance their own relationship, as well as help strengthen marriages of other couples. Local chapters sponsor marriage enrichment groups, retreats and workshops. Quarterly newsletter, leadership training and conferences. (Note: Not counseling.) Write: Better Marriages, P.O. Box 21374, Winston-Salem, NC 27120.

Call 1-800-634-8325. Website: http://www.bettermarriages.org E-mail: acme@bettermarriages.org Marriage Encounter (M.E.) (BILINGUAL) International. Founded 1952. Faith-based weekend program designed to help married couples improve their marriage, grow closer to each other and improve their commitment to each other. Offers support groups, after attending the weekend, called “spirals”, “continuing dialogue groups” or “renewal meetings”. Cost of the weekend is low but varies and often can be waved based on income. Write: Worldwide Marriage Encounter, Inc., 2210 East Highland Ave., Suite 110, San Bernardino, CA 92404-4666. Call 1-800-795-5683; Spanish: 1800-599-2667 or 909-863-9963; Fax: 909-863-9986. Website: http://www.wwme.org E-mail: office@wwme.org

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Recovering Couples Anonymous International. 140 groups. Founded 1988. 12Step. Goal is to assist couples to find freedom from addictive and destructive relationships. RCA is made up of couples committed to restoring caring, commitment and greater intimacy. Offers local support group information. Write: RCA, P.O. Box 11029, Oakland, CA 94611. Call 1-877-663-2317 or 781-794-1456. Website: http://www.recovering-couples.org E-mail: info@recovering-couples.org

ONLINE | TELEPHONE After the Affair Online. Discussion forum to help persons recover after an extramarital affair. Website: http://members3.boardhost.com/affair PARENTING | GRANDPARENTING

NATIONAL | INTERNATIONAL | MODEL Attachment Parenting International International. Founded 1994. Promotes parenting practices that create strong, healthy emotional bonds between parents and their child. Membership and support group meetings are all free of charge. Offers support group referrals, newsletter, advocacy, literature, information and referrals.

Write: Attachment Parenting International, P.O. Box 4615, Alpharetta, GA 30023. Call 1-800-850-8320. Website: http://www.attachmentparenting.org E-mail: info@attachmentparenting.org GAP (Grandparents As Parents) Model. 22 weekly groups throughout LA county.

Founded 1987. Support network, educational information, sharing of experiences and feelings between grandparents and other relative caregivers who are raising their grandchildren for various reasons. Phone support, networking, advocacy, social activities, group member listings, emergency assistance, information and referrals.

Assistance in starting similar groups. Write: GAP, 22048 Sherman Way, #217, Canoga Park, CA 91303. Call 818-264-0880; Fax: 818-264-0882. Website: http://www.grandparentsasparents.org E-mail: madelyn@grandparentsasparents.org

Holistic Moms Network National. Chapters across the US. Founded 2003. Purpose is to provide support, awareness and education for holistic parenting. Provides a nurturing, open-minded and respectful community for parents to share these ideals.

Encourages moms and dads to parent naturally and educate themselves about alternative health, mindful parenting and natural healing. Assists persons in starting new chapters. Write: Holistic Moms Network, P.O. Box 408, Caldwell, NJ 07006. Call 1-877-465-6667. Website: http://www.holisticmoms.org E-mail: info@holisticmoms.org 63

MAD DADS, Inc. (Men Against Destruction Defending Against Drugs and Social-disorder) National. 60 affiliated chapters. Founded 1989. Grassroots organization of fathers aimed at fighting gang and drug-related violence. Provides family and community activities and leadership, community education and mobilization, speaking engagements regarding goals and objectives and chapter formation. Members present themselves as “surrogate fathers” who listen to and care about street teens. National signature program “Neighborhood Street Mentoring Patrols.” Some chapters also have divisions of MOMS and KIDS. Members provide assistance in starting chapters in hard-to-reach neighborhoods. Write: MAD DADS, Inc. P.O. Box 8980, Minneapolis, MN 55408. Call 612-822-0802; Fax: 612-253-0663.

Website: http://www.maddads.com Mocha Moms, Inc. National. 100+ affiliated groups. Founded 1997. Provides support for stay-at-home mothers of color. Sponsors weekly support group meetings, monthly moms-only events, on-going community service and volunteer opportunities. Dues $50/year. Bulletins, information, assistance with starting local chapters and referrals to existing groups. Write: Mocha Moms, Inc., P.O. Box 1995, Upper Marlboro, MD 20773.

Call: 1-877-456-7667 Fax: 301-805-8147. Website: http://www.mochamoms.org Email: nationaloffice@mochamoms.org MOMS Club International. 2000+ affiliated groups. Founded 1983. Mutual support for mothers-at-home. Groups provide at-home mothers of children of all ages emotional and moral support, as well as a wide variety of activities. Provides assistance in starting and maintaining or locating chapters through local coordinators (enclose $2 to cover postage). Write: MOMS Club, 1464 Madera Rd., #N 191, Simi Valley, CA 93065. Website: http://www.momsclub.org E-mail: momsclub@aol.com MOPS, International (Mothers of Pre-Schoolers) International. 3600 affiliated groups. Founded 1973. Offers a non-denominational Christian support group for mothers with children from infancy to 6 school age. MOPS groups meet in churches throughout the U.S., Canada and 32 other countries. Provides assistance in starting local groups. Write: MOPS, International, 2370 South Trenton Way, Denver, CO 80231. Call 1-800-929-1287 or 303-733-5353 (group referrals); 1-888-910-6677 (to start a MOPS group); Fax: 303-733-5770. Website: http://www.mops.org E-mail: info@mops.org Mothers and More National. 180 chapters. Founded 1987. Support and advocacy for women who have altered their career paths to care for their children at home. It is not about opposing mothers who work outside the home; rather it is about respecting, supporting and advocating for choice in how one combines working and parenting.

Provides ongoing support for a woman’s personal needs and interests with regard to active parenting. Also advocates for public and employment policies that 64

accommodate stay-at-home mothers. Newsletter and chapter development guidelines.

Write: Mothers and More, PO Box 2047, Poughkeepsie, NY 12601. Call 855-373-6673; Fax: 845-463-0537. Website: http://www.mothersandmore.org E-mail: info@mothersandmore.org NATHHAN (National Challenged Homeschoolers) National network. Founded 1990. Christian, non-profit organization encouraging families with special needs, particularly those who home educate. Bi-annual magazine, family phone book, phone support, program for parents of special need pre-borns, information and referrals.

Donations accepted. Write: NATHHAN, P.O. Box 310, Moyie Springs, ID 83845. Call 208-267-6246. Website: http://www.nathhan.com E-mail: nathanews@aol.com National Association of Mothers’ Centers National. 30 sites. Founded 1975.

Support, local discussion groups, activities regarding parenting, pregnancy, childbirth and work/life issues. National newsletter, e-news, local newsletters, conferences and advocacy. Has up-to-date information on contacting local Mothers’ Center (NAMC) programs and starting a center. Write: National Association of Mothers’ Centers, 1740 Old Jericho Turnpike, Jericho, NY 11753. Call 1-877-939-6667 or 516-939-6667; Fax: 516-750-5365. Website: http://www.motherscenter.org E-mail: info@motherscenter.org Parents Anonymous, Inc. National. Founded 1969. Country’s oldest child abuse prevention organization. Opportunity for parents to learn new skills, transform their attitudes and behaviors and create lasting changes in their lives. Group meetings offer structured children’s programs. Helps to develop new community groups by providing training, technical assistance, materials and networking. Write: Parents Anonymous, Inc., 250 West 1st Street., Suite 250, Claremont, CA 91711-3475. Call 909-621-6184; Fax: 909-625-6304. Website: http://www.parentsanonymous.org E-mail: parentsanonymous@parentsanonymous.org

PEP (Postpartum Education for Parents) Model. 1 group in California. Founded 1977. Volunteer-run group that provides emotional peer support for parents. Helps parents adjust to the changes in their lives that a baby brings. Education on basic infant care and parent adjustment. Phone help. Group development guidelines. Write: PEP, P.O. Box 6154, Santa Barbara, CA 93130. Call 805-564-3888 (8am-8pm PST).

Website: http://www.sbpep.org E-mail: pepboard@sbpep.org

ONLINE | TELEPHONE BabyCenter Online. Includes a large variety of online groups providing support and information. Groups include: Getting Pregnant; Pregnancy, Breastfeeding; Birth Clubs; Grief and Loss; High Risk Pregnancy; Preschoolers; Parents of Teens and Tweens; among many others. Website: http://community.babycenter.com/groups 65

GrandsPlace Online. Support for grandparents who are parenting children. Website includes chat-rooms, message boards and resources. Website: http://grandsplace.org E-mail: kathy@grandsplace.org Parent Empowerment Network Online. Founded 1996. E-mail support group for parents with disabilities. Website: http://www.disabledparents.net Young Mommies Homesite Online. Support for young moms and pregnant women in their teens and twenties. Message board forums, chatroom, articles, due date calculator, teen pregnancy stats and stories, freebies and helpful resources. Website: http://www.youngmommies.com PARENTS OF CHILDREN WITH BEHAVIORAL PROBLEMS

NATIONAL | INTERNATIONAL | MODEL B.I.L.Y. (Because I Love You: The Parent and Youth Support Groups) National.

47 affiliated groups. Founded 1982. Support groups for parents who have children of all ages with behavioral problems such as truancy, substance abuse or other forms of defiance of authority. Focus is on parents getting back their self-esteem and control of their home. Write: B.I.L.Y., P.O. Box 2062, Winnetka, CA 91396-2062. Call 818-8848242. Website: http://www.becauseiloveyou.org E-mail: bily1982@aol.com

ONLINE | TELEPHONE Conduct Disorders Parent Message Board Online. 7080 members. Founded 1995.

Support for parents of a child with one of the many behavior disorders such as attention deficit hyperactivity disorder, oppositional defiance disorder, bipolar disorder, conduct disorder, depression, anxiety and substance abuse. Parents of children all ages welcome. Website: http://www.conductdisorders.com PARENTS OF PREMATURE | HIGH RISK INFANTS

NATIONAL | INTERNATIONAL | MODEL Sidelines High Risk Pregnancy Support International network. Founded 1991.

Provides support network for mothers with high-risk pregnancies and their families.

Also, links together mothers of babies born premature. For either network (click on “Request Support� or phone). Emotional support via email, phone, and message boards. Also provides educational resources and works on needed advocacy efforts.

Write: Sidelines National Support Network, P.O. Box 1808, Laguna Beach, CA 92652.

Call 1-888-447-4754. Website: http://www.sidelines.org E-mail: sidelines@sidelines.org

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PARENTS | SIBLINGS OF DISABLED | ILL CHILDREN

NATIONAL | INTERNATIONAL | MODEL Birth Defect Research for Children National network. Founded 1982. Links parents of children with similar birth defects for mutual sharing and support. Provides information about birth defects, as well as services and resources that may be helpful to families. Sponsors the National Birth Defect Registry. Maintains database on medical/scientific literature and research. Monthly electronic newsletter. Write: Birth Defect Research for Children, 976 Lake Baldwin Lane, Ste. 104, Orlando, FL 32814.

Call 407-895-0802. Website: http://www.birthdefects.org E-mail: staff@birthdefects.org Family Voices (BILINGUAL) National. 50 affiliated groups. Founded 1995.

Grassroots organization that speaks on behalf of children with special healthcare needs at the national, state and local levels. Encourages and supports families who want to play a role in their child’s healthcare. Advocacy. Literature (Spanish and English). Write: Family Voices, 3701 San Mateo Blvd. NE, Suite 103, Albuquerque, NM 87106. Call 1-888-835-5669 or 505-872-4774 (Mon.-Fri., 9am-5pm MST); Fax: 505872-4780. Website: http://www.familyvoices.org NATHHAN (National Challenged Homeschoolers) National network. Founded 1990. Christian, non-profit organization encouraging families with special needs, particularly those who home educate. Bi-annual magazine, family phone book, phone support, program for parents of special need pre-borns, information and referrals.

Donations accepted. Write: NATHHAN, P.O. Box 310, Moyie Springs, ID 83845. Call 208-267-6246. Website: http://www.nathhan.com E-mail: nathanews@aol.com Parents Helping Parents (MULTILINGUAL) Model. 22 groups. Founded 1976.

Parent-directed family resource center serving children with special needs (due to illness, accident, conditions of birth, learning differences or family stress), their families and the professionals who serve them. Information and referral, specialty programs, family support groups, peer counseling, training and library. Newsletter, group development guidelines and national resource directory online. Outreach in Spanish, Japanese and Vietnamese. Write: PHP, 1400 Parkmoor Ave., Suite 100, San Jose, CA 95126. Call 408-727-5775; Fax: 408-286-1116. Website: http://www.php.com Email: info@php.com PAVE (Partnership for Action, Voices for Empowerment) Model. 1 group in Washington. Founded 1979. Parent-directed organization to increase independence, empowerment and opportunities for children/youth with special needs and their families through training, information, referrals and support. Quarterly newsletter, resources, networking between parents, workshops on a variety issues, phone support 67

and conferences on special education issues are provided as well. Has special program that focuses on military family concerns (for military families worldwide).

Write: PAVE, 6316 S. 12th, Tacoma, WA 98465. Call 1-800-572-7368 or 253-5652266; Fax: 253-566-8052. Website: http://www.wapave.org E-mail: pave@wapave.org

Sibling Support Project National. 400 affiliated groups. Founded 1990. Organization dedicated to the life-long concerns of brothers and sisters of people with special health, developmental and mental health concerns. Provides workshops on sibling issues, hosts listservs and provides training on how to implement Sibshops (lively workshops for school-age siblings). Write: Sibling Support Project, c/o Donald Meyer, 6512 23rd Ave. NW, Seattle, WA 98117. Call 206-297-6368. Website: http://www.siblingsupport.org E-mail: donmeyer@siblingsupport.org Washington State Fathers Network Model. 15 groups in Washington. Founded 1986. Provides mutual support and resources for fathers and families raising children with special needs and developmental disabilities. Web page with extensive links, articles by dads and materials for providers regarding family-centered, culturally competent care. E-newsletters, videos and monographs available. Statewide and regional conferences. Write: WSFN, 16120 N.E. Eighth St., Bellevue, WA 98008. Call Greg Schell 425-653-4286; Fax: 425-474-1069. Website: http://www.fathersnetwork.org E-mail: greg.schell@kindering.org

ONLINE | TELEPHONE SibNet Online. 1500+ members. Founded 1998. Provides support for and about adult brothers and sisters of people with special health, developmental and emotional needs. Opportunity for adult brothers and sisters to share information and discuss issues of common interest. Subscribers can connect with their peers, seek information about local services, create connections for their siblings and discuss the proper policies agencies should have toward brothers and sisters. Website: http://groups.yahoo.com/group/sibnet E-mail: sibnet-owner@yahoogroups.com SEPARATION | DIVORCE

NATIONAL | INTERNATIONAL | MODEL Beginning Experience, The International. 78 teams. Founded 1974. Christianbased. Support programs for divorced, widowed, separated adults and their children enabling them to work through the grief of a lost marriage. Write: The Beginning Experience, c/o International Ministry, Inc., 1657 Commerce Dr., Suite 2B, South Bend, IN 46628. Call 1-866-610-8877 or 574-283-0279; Fax: 574-283-0287. Website: http://www.beginningexperience.org E-mail: imc@beginningexperience.org 68

Catholic Divorce Ministry International. 3000+ groups. Founded 1974. Religious, educational and emotional aspects of separation, divorce, remarriage and widowhood are addressed through self-help groups, conferences and training programs. Families of all faiths are welcome. Group development guidelines. Newsletter. Membership dues starting at $35/yr. (includes newsletter, discounts and resources). Write: Catholic Divorce Ministry - NACSDC, P.O. Box 10, Hancock, MI 49930. Call 1-855-727-2269; Fax: 1-855-729-8751. Website: http://www.nacsdc.org E-mail: office@nacsdc.org

Rainbows For All Children, Inc. International. 4900 affiliated groups. Founded 1983. Establishes peer support groups in faith communities, schools or social service agencies for children and adults who are grieving a death, divorce or other painful transition in their family. Crisis and Natural Disaster Curricula also available. Groups are led by trained adults. Online newsletter, information and referrals. Write: Rainbows For All Children, Inc., 1007 Church St., Suite 408, Evanston, IL 60201. Call 847-9521770; Fax: 847-952-1774. Website: http://www.rainbows.org E-mail: info@rainbows.org

ONLINE | TELEPHONE Parents Against Parental Alienation Online. E-group for parents dealing with parental alienation. Group seeks to promote shared parenting, and expand personal, community and cultural strategies in responding to parenting problems arising from divorce. Website: http://groups.yahoo.com/group/parentsagainstparentalalienation E-mail: parentsagainstparentalalienation-owner@yahoogroups.com SINGLE PARENTING

NATIONAL | INTERNATIONAL | MODEL Parents Without Partners National. 225+ chapters/5 affiliates. Founded 1957.

Educational organization of single parents (either divorced, separated, widowed or never married). Online chatroom, single parent magazine, chapter development guidelines and personal growth/self-help articles from various authors. Local chapter activities for families and parents only. Annual convention. Membership dues $3050/yr. Write: Parents Without Partners, 1100-H Brandywine Blvd, Zanesville, OH 43701-7303. Call 1-800-637-7974. Website: http://www.parentswithoutpartners.org

Single Mothers By Choice National. 25 chapters. Founded 1981. Support and information for mature single women, who have chosen or who are considering, single motherhood. “Thinkers� workshops, quarterly newsletter, brochure and list of back 69

issues of newsletter available. Write: SMC, P.O. Box 1642, New York, NY 10028. Call 212-988-0993. Website: http://www.singlemothersbychoice.org

ONLINE | TELEPHONE SearchMothers.com Online. Support, community, resources, and insights for single mothers. Website: http://searchmothers.com/msgboards E-mail: info@searchmothers.com Single Family Voice Online. 19,000 members. Founded 1997. Community of single parents sharing support, information and understanding. Forums for many situations including mothers, fathers, twins, grandparents, interracial, military, teens, divorced, etc. Website: http://www.singlefamilyvoices.com Single Parents Network Online. Provides an online discussion forum support boards, information and resources. Focus is on our children and their future. The Network is about connecting together the single parent resources so that collectively people can make single healthy choices as individual parent. Website: http://singleparentsnetwork.com/community.html STEPPARENTING

ONLINE | TELEPHONE Bonus Families Online. 850+ members. Founded 2002. Support for extended families, their children, parents, former and current partners. Message boards, newsletter and events. Website: http://www.bonusfamilies.com/support-group.php E-mail: jennifer@bonusfamilies.com StepTogether Online. Founded 1998. Provides virtual support for step-families.

Message board is a place to get advice, share stories, and find solutions. Website: http://www.steptogether.com/messageboard.html E-mail: steptogether@steptogether.org TWINS & TRIPLETS

NATIONAL | INTERNATIONAL | MODEL MOST, Inc. (Mothers Of Supertwins) International. Founded 1987. Support network of families who are expecting, or are already the parents of twins, triplets or more.

Provides information, support, resources, empathy during pregnancy, infancy, toddlerhood and school age. Blog, forums, networking, phone and online support.

Specific resource persons for individual challenges. Help in starting groups. Write: 70

MOST, P.O. Box 306, East Islip, NY 11730-0306. Call Maureen 631-859-1110; Fax: 631-859-3580. Website: http://www.mostonline.org E-mail: info@mostonline.org Multiples of America (formerly known as National Organization of Mothers of Twins Clubs) National. 475 clubs. Founded 1960. Opportunity for parents of multiple birth children (twins, triplets, quads) to share information, concerns and advice on dealing with their unique challenges. Literature, quarterly newspaper ($15/yr), group development guidelines, educational materials, pen pal program, special needs and bereavement support. Membership through local chapters or as individual affiliate members. Write: Multiples of America, 2000 Mallory Lane, Suite 130-600, Franklin, TN 37067-8231. Call 248-231-4480. Website: http://www.multiplesofamerica.org Email: multiplesofamerica@aol.com Triplet Connection International network. Founded 1983. Network of caring and sharing for families with multiples. Emphasis is on providing quality information regarding pregnancy management and preterm birth prevention for high risk multiple pregnancies. Expectant parent’s packet, new parent’s packet, quarterly newsletter, phone support and area resources. Write: Triplet Connection, P.O. Box 429, Spring City, UT 84662. Call 435-851-1105; Fax: 435-462-7466. Website: http://www.tripletconnection.org E-mail: tc@tripletconnection.org

HEALTH

AARSKOG SYNDROME

NATIONAL | INTERNATIONAL | MODEL The Aarskog Syndrome Parents Support Group International network. Founded 1993. Support provided via e-mail or letter writing (regular mail delivery) for families of children and adults affected with Aarskog syndrome. Free complimentary information packet, via electronic or postal mail, for any person in the United States. Write: The Aarskog Syndrome Parents Support Group, c/o Shannon Caranci, 62 Robin Hill Lane, Levittown, PA 19055-1411. E-mail: shannonfaith49@msn.com or aarskogmom@outlook.com ACCIDENT VICTIMS

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ACCESS (AirCraft Casualty Emotional Support Services) National network.

Founded 1996. Matches persons who have lost a loved one in an aircraft related tragedy to volunteers who previously experienced a similar loss. Goal is to help fill the void that occurs when the emergency and disaster relief organizations disband, the initial shock subsides and the natural grieving process intensifies. Offers guidelines to help start a similar group. Persons communicate through e-mail or by phone. Online newsletter. Call 1-877-227-6435. Website: http://www.accesshelp.org E-mail: info@accesshelp.org Trauma Support Network National. Opportunity to connect with other trauma survivors, share experiences, learn how to better manage life after a serious injury and gain support and hope from others. Support groups are facilitated by a trauma survivor. Group members have different types of injuries (head injuries, leg injuries, multiple trauma) resulting from different types of events (motor vehicle crashes, falls, gunshot wounds). Guest speakers. Online support forums for trauma survivors and their families and friends. Write: TSN National Administrator, c/o American Trauma Society, 201 Park Washington Ct., Falls Church, VA 22046. Call 1-800-556-7890 or 703-241-5603. Website: http://www.traumasurvivorsnetwork.org/pages/peer-supportgroups E-mail: info@amtrauma.org Wings of Light, Inc. National. 3 support networks. Founded 1995. Support and information network for individuals whose lives have been touched by aviation accidents. Separate networks for airplane accident survivors, families and friends of persons killed in airplane accidents and persons involved in the rescue, recovery and investigation of crashes. Information, referrals and phone support. Website: http://www.wingsoflight.org E-mail: info@wingsoflight.org ACID MALTASE DEFICIENCY | POMPE DISEASE

NATIONAL | INTERNATIONAL | MODEL Acid Maltase Deficiency Association (AMDA) International network. Founded 1995. Support and information for persons affected by Pompe disease (acid maltase deficiency). Newsletter, literature, phone support, information and referrals. Supports research into the cause and cure. Write: Acid Maltase Deficiency Association, P.O. Box 700248, San Antonio, TX 78270. Call 210-494-6144; Fax: 210-490-7161. Website: http://www.amda-pompe.org E-mail: TiffanyLHouse@aol.com ACIDEMIA

NATIONAL | INTERNATIONAL | MODEL

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Organic Acidemia Association, Inc. International. Founded 1982. Support, information and networking for families affected by organic acidemia disorders. Dues $25/yr. Internet listserv, family conferences, research information, bi-annual newsletter and Facebook group. Advocates newborn screening. Write: Organic Acidemia Association, c/o Kathy Stagni, 13210 35th Ave. North, Plymouth, MN 55441. Call 763559-1797; Fax: 1-866-539-4060. Website: http://www.oaanews.org E-mail: oaanews@aol.com

ACQUIRED IMMUNE DIFFICIENCY SYNDROME | HIV ONLINE | TELEPHONE Let’s Kick ASS (AIDS Survivors Syndrome) Online. Founded 2013. 1 group in San Francisco. Support for individuals with AIDS Survivor Syndrome. Help in healing wounded AIDS warriors. Group has several online and social media venues. Website: http://letskickass.org; Facebook: https://www.facebook.com/AIDSSurvivorSyndrome; Twitter: @LetsKickASS_org; Meetings schedules on events page: LetsKickASS.com/events; Meetup: http://www.meetup.com/Lets-Kick-ASS/members/92505202; BetaBlog sponsored by the San Francisco AIDS Foundation: http://betablog.org/kicking-ass-meet-tez POZ/AIDS Community Forums Online. 500+ members. Information and support for people with HIV/AIDS, their friends, family, caregivers and others concerned about HIV/AIDS. Support via forums. Website: http://forums.pos.com and http://www.poz.com ACROMEGALY

NATIONAL | INTERNATIONAL | MODEL Acromegaly Community National. Provides an emotional and communal support network for people touched by Acromegaly, including their friends and family. Offers a central location for medical information on issues including surgery, medication, radiation and post diagnosis support. Write: AC, c/o Jill Sisco, 62990 E 282 Rd., Grove, OK 74344. Call 918-786-8209; Fax: 918-787-5556. Website: http://acromegalycommunity.com ADDISON’S | ADRENAL DISEASE

NATIONAL | INTERNATIONAL | MODEL National Adrenal Diseases Foundation National. 43 affiliated groups. Founded 1985. Dedicated to serving the needs of those with adrenal disease and their families, especially through support group information and education. Quarterly newsletters, pamphlets and group development guidelines. Write: National Adrenal Diseases 73

Foundation, 505 Northern Blvd., Suite 200, Great Neck, NY 11021. Call 516-487-4992.

Website: http://www.nadf.us E-mail: nadfmail@nadf.us ALBINISM

NATIONAL | INTERNATIONAL | MODEL NOAH (National Organization for Albinism & Hypopigmentation) National. Local chapters and contact people. Founded 1982. Support and information for individuals, families and professionals dealing with albinism (a lack of melanin pigment).

Encourages research leading to improved diagnosis and treatment. Quarterly magazine, chapter development guidelines, national conference, family summer camp, online community and regional gatherings. Dues $30 (US); $50 (International) and $40 (Professional). Write: NOAH, P.O. Box 959, East Hampstead, NH 03826-0959. Call 1800-473-2310 or 603-887-2310; Fax: 1-800-648-2310. Website: http://www.albinism.org E-mail: info@albinism.org ALLERGY

NATIONAL | INTERNATIONAL | MODEL Kids with Food Allergies National. Specializes in day-to-day support for families.

Offers a wide range of practical food allergy educational tools, online support community, e-newsletter, recipes and allergy alerts. Write: Kids with Food Allergies, 5049 Swamp Road, Suite 303, PO Box 554, Fountainville, PA 18923. Call 215-2305394; Fax: 215-340-7674. Website: http://www.kidswithfoodallergies.org Asthma and Allergy Foundation of America National. 100 affiliated groups. 5 chapters. Founded 1953. Provides support and information for persons with asthma and/or allergies through support groups, information and referrals and advocacy.

Supports research, educates public about allergies and asthma. Lists groups nationwide. Assists in starting new groups. Write: AAFA, 8201 Corporate Dr., Suite 1000, Landover, MD 20785. Call 1-800-727-8462 or 1-800-7-ASTHMA (Mon.-Fri., 10am-3pm EST). Website: http://www.aafa.org click on “Find a Support Group.� Email: info@aafa.org

The Food Allergy and Anaphylaxis Network (FAAN) National network. 30 groups.

Founded 1991. Mission is to increase public awareness about food allergies and anaphylaxis, a severe allergic reaction that is rapid in onset and may cause death.

Provides advocacy and education, advance research on behalf of all those affected by food allergies and anaphylaxis. Information and referrals, conferences, literature, 74

phone support, teen and children support, booklets, newsletters and educational videos. Guidelines available for starting similar groups. Write: FAAN, 11781 Lee Jackson Highway, Suite 160, Fairfax, VA 22033. Call 1-800-929-4040 or 703-691-3179 (Mon.-Thurs., 9am-5:00pm; Fri., 9am-1:30pm EST); Fax: 703-690-6598. Website: http://www.foodallergy.org or http://www.faanteen.org (teens) or http://www.faankids.org (kids) ALOPECIA AREATA

NATIONAL | INTERNATIONAL | MODEL National Alopecia Areata Foundation National. Founded 1981. Support network for people with alopecia areata, totalis, and universalis. Goals are to set up support groups around the country, educate the public and fundraising for research. Quarterly newsletter and support group guidelines. Write: National Alopecia Areata Foundation, 66 Mitchell Blvd., Suite 200B, San Rafael, CA 94903. Call 415-472-3780; Fax: 415472-5343. Website: http://www.naaf.org E-mail: info@naaf.org ALS (LOU GEHRIG’S DISEASE) | PRIMARY LATERAL SCLEROSIS

NATIONAL | INTERNATIONAL | MODEL The ALS Association National. 39 chapters and support groups. Founded 1985.

Dedicated to finding the cause, prevention and cure of amyotrophic lateral sclerosis.

Aims to enhance the quality of life for people with ALS and their families. Provides chapter development guidelines. Write: The ALS Association, 1275 K Street NW, Ste 250, Washington, DC 20005. Call 1-800-782-4747 or 818-880-9007 for non-medical information and referral (Mon.-Fri., 7:30am-4pm PST); Fax: 818-880-9006. Website: http://www.alsa.org E-mail: alsinfo@alsa-national.org

ONLINE | TELEPHONE ALS Forums Online. 550+ members. Support, information and sharing of experiences for persons with amyotrophic lateral sclerosis (Lou Gehrig’s disease) and motor neuron diseases, their families and friends. Also includes primary lateral sclerosis, progressive muscular atrophy and multifocal motor neuropathy. Website: http://www.alsforums.com PLS Friends Online. Opportunity for persons with primary lateral sclerosis or hereditary spastic paraplegia, progressive neuromuscular disorders, to share information and support via an online discussion group. Fosters support and an exchange of ideas among PLSand HSP patients, their relatives, caregivers and health care professionals. Website: http://health.groups.yahoo.com/group/pls-friends Email: PLS-FRIENDS-owner@yahoogroups.com 75

ALVEOLAR CAPILLARY DYSPLASIA

NATIONAL | INTERNATIONAL | MODEL Alveolar Capillary Dysplasia Association International network. Founded 1996.

Mutual support for families who have lost a child to Alveolar Capillary Dysplasia (ACD), a congenital lung disorder. Aim is to share information while offering supportive environment to share fears and concerns. Encourages research into cause and cure.

Literature, networking, information, newsletter and referrals. Write: Alveolar Capillary Dysplasia Association, c/o Steve & Donna Hanson, 5902 Marcie Court, Garland, TX 75044-4958. Website: http://www.acd-association.com E-mail: sdesj@verizon.net ALZHEIMER’S DISEASE | DEMENTIA

NATIONAL | INTERNATIONAL | MODEL Alzheimer’s Association National. 80+ chapters. Founded 1980. Assistance and information for caregivers of Alzheimer’s patients. Weekly e-newsletter and literature.

Online message board. Write: Alzheimer’s Association, 225 N. Michigan Ave., Suite 1700, Chicago, IL 60601. Call 1-800-272-3900. Website: http://www.alz.org E-mail: info@alz.org Lewy Body Dementia Association, Inc. National. 80 groups. Founded 2004.

Purpose is to support and educate caregivers of persons with Lewy body dementia.

Information and resources, online groups, face-to-face groups nationwide. Helps persons to start local groups. Write: LBDA, 912 Killian Hill Rd., SW, Lilburn, GA 30047.

Call 404-935-6444; Caregiver Link: 1-800-539-9767. Website: http://www.lewybodydementia.org (click on “Find Support” to find local face-to-face groups and/or virtual online discussion groups.)

AMYLOIDOSIS

NATIONAL | INTERNATIONAL | MODEL Amyloidosis Support Groups, Inc. National. 22 regional groups. Founded 2005.

Support, education and advocacy, for patients, caregivers, families, those who lost loved ones to amyloidosis and friends of amyloidosis patients. Also deals with multiple myeloma, peripheral neuropathy, familial amyloidosis and protein misfolding.

Telephone support network, pen pal program, educational and awareness materials, national conference, advocacy, information and referrals. Online mutual aid activities include message board and mailing list. Assistance in starting and maintaining groups.

Write: Amyloidosis Support Groups, Inc., 232 Orchard Drive, Wood Dale, IL 60191.

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Call 1-866-404-7539 (24 hr.); Fax: 847-350-0577. Website: http://www.amyloidosissupport.com Online Listserv: http://www.amyloidosisonline.com Awareness Materials: http://www.amyloidaware.com E-mail: muriel@finkelsupply.com ANDROGEN INSENSITIVITY

NATIONAL | INTERNATIONAL | MODEL AIS-DSD Support Group for Women and Families Founded 1995. Provides information and support to individuals and families affected by androgen insensitivity syndrome (AIS) and other Disorders of Sex Development, including but not limited to 46XY gonadal dysgenesis - Swyer’s syndrome, gonadal dysgenesis/mixed gonadal dysgenesis, 5-alpha reductase deficiency, 17-beta hydroxysteroid dehydrogenase deficiciency, MRKH syndrome, CAH and ovotesticular DSD. Support for affected adults (female identified and male identified), parents and teens. Information and referrals, phone support, secure online chat forums, private social media forums, regional and national support group meetings, access to distinguished Medical Advisory Panel, literature and advocacy. Write: AIS-DSD Support Group for Women and Families, P.O. Box 2148, Duncan, OK 73534-2148. Website: http://www.aissgusa.org E-mail: aissgusa@hotmail.com

ONLINE | TELEPHONE Bodies Like Ours | Intersex Information and Peer Support Online. 1000+ members. Primarily provides support via forums. Group seeks to end the shame and secrecy that surrounds people born intersexed and/or with atypical genitals through community and peer support. Separate messages-boards for CAH (congenital adrenal hyperplasia). AIS (Androgen Insensitivity Syndrome), MRKH (Meyer-RokitanskyKuester-Hauser syndrome), Klinefelters syndrome, chromosomal anomalies and more.

Website: http://www.bodieslikeours.org/forums ANEMIA

NATIONAL | INTERNATIONAL | MODEL Aplastic Anemia and MDS International Foundation, Inc. International. 12 groups.

Founded 1983. Offers a support network where patients and families can connect with others. Provides free educational materials for those affected by aplastic anemia, MDS and PNH, advocacy, newsletters, webinars, interactive online learning center, and funds research. Provides information on local support groups and helps people with starting local support groups. Write: Aplastic Anemia and MDS International Foundation Inc., 100 Park Ave., Suite 108, Rockville, MD 20850. Call 1-800-747-2820 or 301-279-7202; Fax: 301-279-7205. Website: http://www.aamds.org 77

Cooley’s Anemia Foundation National. 9 chapters. Founded 1954. Offers education and networking for families affected by Cooley’s anemia (thalassemia). Fund-raising for research. Newsletter, annual seminars, research grants, patient support group, patient services and chapter development guidelines. Write: Cooley’s Anemia Foundation, 330 Seventh Ave., Suite 200, New York, NY 10001. Call 1-800-522-7222 or 212-279-8090; Fax: 212-279-5999. Website: http://www.cooleysanemia.org Email: info@cooleysanemia.org ANGELMAN SYNDROME

NATIONAL | INTERNATIONAL | MODEL Angelman Syndrome Foundation, Inc. National network. Founded 1992. Mission is to advance the awareness and treatment of Angelman syndrome through education, information, research and advocacy. Supports individuals with Angelman syndrome, their families and other concerned persons. Write: Angelman Syndrome Foundation, 75 Executive Dr., Suite 327, Aurora, IL 60504. Call 1-800-432-6435. Website: http://www.angelman.org E-mail: info@angelman.org ANKYLOSING SPONDYLITIS

NATIONAL | INTERNATIONAL | MODEL Juvenile Arthritis Alliance National. 10 Regions. Founded 1981. Council of the Arthritis Foundation devoted to serving the special needs of children, teens and young adults with childhood rheumatic diseases (including juvenile rheumatoid arthritis, systemic lupus erythematosus and ankylosing spondylitis) and their families. Provides information, advocacy, educational materials, programs and conferences. Offers online support and local chapter locator. Membership $20/yr. (for Arthritis Fdn). Write: Juvenile Arthritis Alliance, 1330 West Peachtree St., Suite 100, Atlanta, GA 30309.

Call 404-872-7100 ext. 7538. Website: http://www.kidsgetarthritistoo.org Spondylitis Association of America International network. 25 affiliated groups.

Founded 1983. Support, research, advocacy and education for patients, families, friends and health professionals concerned with ankylosing spondylitis and related diseases e.g.: (reactive arthritis/Reiter’s syndrome, psoriatic arthritis, and inflammatory bowel disease). Books, DVDs, CDs, brochures and quarterly magazine. Guidelines available to start support groups. Write: Spondylitis Association of America, P.O. Box 5872, Sherman Oaks, CA 91413. Call 1-800-777-8189; Fax: 818-892-1611. Website:

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http://www.spondylitis.org E-mail: info@spondylitis.org

ONLINE | TELEPHONE KickAS.org Online. 6153 members. Support and information for persons with ankylosing spondylitis and related disorders. Provides inspiration, friendship and humor. Message board. Separate forums for affected persons, families, friends and affected teens. Website: http://www.kickas.org Myelodysplastic Syndromes Foundation Online. Unmoderated forums for patients and professionals dealing with myelodysplastic syndromes, a group of bone marrow diseases. Also has referrals to treatment centers. Website: http://www.mdsfoundation.org ANOPHTHALMIA

NATIONAL | INTERNATIONAL | MODEL International Children’s Anophthalmia Network (ICAN) National. Provides support via their online Parents Forum, also has annual conferences, links to resources and information. Write: ICAN, c/o Tanya Bardakjian, Albert Einstein Medical Center, Genetics, Levy 2 W, 5501 Old York Rd., Philadelphia, PA 19141. Call 1-800-580-4226.

Website: http://www.anophthalmia.org E-mail info@anophthalmia.org

ONLINE | TELEPHONE Microphthalmia Support Group Online. 635 members. Founded 2000. Support, education and understanding for those with microphthalmia (abnormally small eyes) and their families. Website: http://groups.yahoo.com/group/microphthalmia E-mail: microphthalmia-owner@yahoogroups.com ANOSMIA | PAROSMIA

ONLINE | TELEPHONE Anosmia Online. Founded 1999. Provides mailing list and resources for people with anosmia (lacking the sense of smell). Website: http://groups.yahoo.com/group/anosmia E-mail: anosmiaowner@yahoogroups.com ANORCHIDISM

NATIONAL | INTERNATIONAL | MODEL

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Anorchidism Support Group International network. Founded 1995. Information and support for families and persons affected by anorchidism (absence of the testes), whether congenital or acquired (aka testicular regression syndrome, anorchia, vanishing testes syndrome or absent testes). Newsletter. Provides information and support via phone, letter or e-mail. An information leaflet available on request. Call 44(0)1708 372597 (will return phone calls outside of UK; please allow for time difference when calling, please telephone Mon.-Sat., 9am-6pm GMT/BST). Please check website or e-mail for mailing address. Website: http://www.asg4u.org E-mail: asguk@asg4u.org

ONLINE | TELEPHONE Circle Of Friends With Arachnoiditis (COFWA) Online. 1758 members. Founded 1998. Provides a place for support, caring, sharing of information and friendly conversations for persons with arachnoiditis. Website: http://www.cofwa.org Yahoo: http://health.groups.yahoo.com/group/cofwa E-mail: admin@cofwa.org;cofwaowner@yahoogroups.com ANTIPHOSPHOLIPID ANTIBODY SYNDROME

NATIONAL | INTERNATIONAL | MODEL APS Foundation of America, Inc. Founded 2005. Dedicated to fostering and facilitating joint efforts in the areas of support, education, public awareness, research and patient services for those affected by Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, young strokes and heart attacks.

Online support forum. Write: APS Foundation of America, Inc., P.O. Box 801, La Crosse, WI 54602-0801. Call 608-782-2626; Fax: 608-782-6569. Website: http://www.apsfa.org E-mail: apsfa@apsfa.org APHASIA

NATIONAL | INTERNATIONAL | MODEL National Aphasia Association National umbrella organization. 350+ groups.

Founded 1987. Educates the public about aphasia. Provides educational information to patients and their families about coping with aphasia. Listing of affiliates and support groups. Write: National Aphasia Association, 350 Seventh Ave., Suite 902, New York, NY 10001. Call 1-800-922-4622; Fax: 212-267-2812. Website: http://www.aphasia.org E-mail: naa@aphasia.org APRAXIA DYSPRAXIA

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NATIONAL | INTERNATIONAL | MODEL CASANA/Apraxia-Kids (Program of The Childhood Apraxia of Speech Association of North America) National. Founded 2000. Information and support for parents of children with apraxia of speech, speech-language pathologists and others interested in apraxia. Provides encouragement for parents to start support groups.

Education, multi-media educational products, newsletter, literature, conferences, research, information, listserv, message boards, e-mail and help desk referrals to selfhelp groups nationwide. Write: Apraxia Kids, 416 Lincoln Rd., 2nd Floor, Pittsburgh, PA 15209. Website: http://www.apraxia-kids.org E-mail: helpdesk@apraxia-kids.org ARTERIOVENOUS MALFORMATION

ONLINE | TELEPHONE AVM Survivors Online. 30,000+ members across 33 communities. Provides support, information and network for individuals with Arteriovenous Malformation. Website: http://www.avmsurvivors.org E-mail: info@bensfriends.org ARTHRITIS

NATIONAL | INTERNATIONAL | MODEL International Palindromic Rheumatism Society International. Founded 2005.

Provides support for individuals with Palindromic Rheumatism via forums and phone meetings. Write: IPRS, 44 Baguley Street, Droylsden, Manchester, M43 7BB, UK. Call +44(0)17-437-90115 Website: http://www.palindromicrheumatism.org E-mail: iprs@palindromic.org or iprs@f2s.com International Still’s Disease Foundation National. Provides support for individuals with Still’s disease, a form of arthritis that is characterized by high spiking fevers and evanescent (transient) salmon-colored rash, through discussion boards, chat and Yahoo and Facebook “closed” online support groups. Write: ISDF, 1123 S. Kimbrel Ave., Panama City, FL 32404. Call 850-871-6656; Fax: 850-871-6656. Website: http://www.stillsdisease.org Juvenile Arthritis Alliance National. 10 regions. Founded 1981. Council of the Arthritis Foundation devoted to serving the special needs of children, teens and young adults with childhood rheumatic diseases (including juvenile rheumatoid arthritis, systemic lupus erythematosus and ankylosing spondylitis) and their families. Provides information, advocacy, educational materials, programs and conferences. Offers online support and local chapter locator. Membership $20/yr. (for Arthritis Fdn). Write: Juvenile Arthritis Alliance, 1330 West Peachtree St., Suite 100, Atlanta, GA 30309.

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Call 404-872-7100 ext. 7538 (Mon.-Fri., 8:30-5pm). Website: http://www.kidsgetarthritistoo.org

ONLINE | TELEPHONE Living with PSA (psoriatic arthritis) Online. Provides support and education to persons with psoriatic arthritis. Also has resource information. Website: http://www.livingwithpsoriaticarthritis.org/forum ARTHROGRYPOSIS

NATIONAL | INTERNATIONAL | MODEL Arthrogryposis Multiplex Congenita Support, Inc. International. 1300 members.

Founded 2005. Provides and encourages understanding and mutual support among anyone affected by Arthrogryposis Multiplex Congenita (AMC). Aim is to increase awareness, provide educational material to new parents or soon-to-be parents and provide resource information to the medical field to assist them in the treatment of AMC. Online chats every Thursday of each month. Holds annual AMC Support Conference each Summer. Write: Arthrogryposis Multiplex Congenita Support Inc. (AMCSI), P.O. Box 1883, Salyersville, KY 41465. Website: http://www.amcsupport.org E-mail: bod@amcsupport.org ATAXIA

NATIONAL | INTERNATIONAL | MODEL National Ataxia Foundation International. 53 support groups. Founded 1957.

Assists families with support programs, ataxia information and resources. Provides education for professionals and the public. Promotes research into causes and treatments of ataxia. Newsletter, assistance in starting support groups, organizing fundraisers, and various Fact Sheets are available. Write: National Ataxia Foundation, 2600 Fernbrook Lane, Suite 119, Minneapolis, MN 55447. Call 763-553-0020; Fax: 763-553-0167. Website: http://www.ataxia.org E-mail: naf@ataxia.org

ONLINE | TELEPHONE Friedreich’s Ataxia Parents Group (FAPG) Online. Support for parents and guardians of children with Friedreich’s Ataxia or other childhood onset ataxias.

Website: http://www.faparents.org INTERNAF Online. Provides support via an international e-mail based forum to exchange information and support for those who are diagnosed with ataxia. Open to patients, families and friends. Also has links to yahoo support group and other worldwide support groups Online. Website: http://internaf.org

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Living with Ataxia Discussion Forum Online. 1400 members. Provides support for persons living with ataxia. Offers chat room, forum. blogs and information for patients and their caregivers. Website: http://www.livingwithataxia.org AUTOIMMUNE DISORDERS

NATIONAL | INTERNATIONAL | MODEL American Autoimmune Related Diseases Assn., Inc. National. Founded 1991.

Mutual support and education for patients with any type of autoimmune disease.

Advocacy, referrals to single disease organizations and support groups, literature, conferences and quarterly newsletter. Supports research and physician symposium.

Dues/newsletter subscription $34/yr. Write: American Autoimmune Related Diseases Association, 22100 Gratiot Ave., Eastpointe, MI 48021-2227. Call 586-776-3900 or 1800-598-4668 (for a packet of information about autoimmunity); Fax: 586-776-3903.

Website: http://www.aarda.org E-mail: aarda@aarda.org BARTH SYNDROME

NATIONAL | INTERNATIONAL | MODEL Barth Syndrome Foundation (MULTILINGUAL) International. Founded 2000. Offers support to persons with Barth syndrome and their families. Provides information, support, awareness, medical database and repository, diagnostic and clinical descriptions and fact sheets. Moderated listserv referrals, pen-pals and biennial conference. Peer-to-peer mentoring program. Write: Barth Syndrome Foundation, Inc., P.O. Box 618, Larchmont, New York 10538. Call 850-273-6947; Fax: 518-213-4061.

Website: http://www.barthsyndrome.org E-mail bsfinfo@barthsyndrome.org BATTEN DISEASE

NATIONAL | INTERNATIONAL | MODEL Batten Disease Support and Research Association International. 12 affiliated groups. Founded 1987. Emotional support and information for families of persons with Batten disease, a rare, neurological condition. Promotes research, annual conference, literature, parent mentor program. Newsletter. Write: Batten Disease Support & Research Assn., 1175 Dublin Rd., Columbus, OH 43215. Call 1-800-448-4570.

Website: http://www.bdsra.org E-mail: bhetteberg@bdsra.org BENIGN ESSENTIAL BLEPHAROSPASM

NATIONAL | INTERNATIONAL | MODEL 83

Benign Essential Blepharospasm Research Foundation, Inc. National. 170 groups. Founded 1981. Provides information and emotional support to persons with benign essential blepharospasm (BEB) and meige syndrome. Networks people together with similar symptoms. Doctor referrals and education. Supports research, bimonthly newsletter and local group development guidelines. Voluntary contributions.

Write: B.E.B.R. Foundation, P.O. Box 12468, Beaumont, TX 77726-2468. Call 409832-0788; Fax: 409-832-0890. Website: http://www.blepharospasm.org E-mail: bebrf@blepharospasm.org

ONLINE | TELEPHONE About BFS Online. Supportive community for persons suffering from BFS (benign fasciculation syndrome). Offers support, information and public education about BFS. Website: http://www.aboutbfs.com/forums BEHCET’S SYNDROME

NATIONAL | INTERNATIONAL | MODEL American Behcet’s Disease Association National network. Founded 1978. Mutual support and information for Behcet’s patients, their families and professionals.

Newsletter (transcribed on tape for visually impaired), phone support, pen pals, conferences, medical advisory board, pamphlets, literature, press kit, information and referrals. Write: American Behcet’s Disease Association, P.O. Box 80576, Rochester, MI 48308. Call 1-800-723-4238 (9am-9pm CST). Website: http://www.behcets.com E-mail: smcelgunn@behcets.com Vasculitis Foundation International. 30+ groups. Founded in 1995. Provides support for a variety of vascular disorders including Behcet’s disease, Buerger’s disease, Cryogiobullnemia, Henock-Schonlein Purpura, Kawasaki disease, Wegener’s disease and other vascular anomalies. Publishes newsletter, literature, provides advocacy.

Write: Vasculitis Foundation, PO Box 28660, Kansas City, MO 64188. Call 1-800-2279474 or 816-436-8211. Website: http://www.vasculitisfoundation.org/support BLADDER EXSTROPHY

NATIONAL | INTERNATIONAL | MODEL Association for the Bladder Exstrophy Community International network.

Founded 1991. Mutual support for persons affected by bladder exstrophy including: parents of children with bladder exstrophy, adults, healthcare professionals and others interested in bladder exstrophy. Newsletter, literature, information and referrals, conferences, advocacy and directory of members. Membership is free. Write: Association for the Bladder Exstrophy Community, 6737 W. Washington St., Suite 84

3265, West Allis, WI 53214. Website: http://www.bladderexstrophy.com BRACHIAL PLEXUS

NATIONAL | INTERNATIONAL | MODEL United Brachial Plexus Network, Inc. National. Offers support, awareness, online literature and magazine for parents of children with newborn birth injuries as well as education on preventing the tragedy of unnecessary newborn birth injuries. To find support click on ‘FORUMS’. Call 781-315-6161. Write: UBPN, 1610 Kent St., Kent, OH 44240. Website: http://www.ubpn.org E-mail: info@ubpn.org BRAIN ANEURYSM

NATIONAL | INTERNATIONAL | MODEL The Brain Aneurysm Foundation National. Provides support, critical awareness, education and research funding to reduce the incidence of brain aneurysm ruptures.

Write: Brain Aneurysm Foundation, 269 Hanover Street, Building 3, Hanover, MA, 02339. Call 1-888-272-4602 or 781-826-5556; Fax: 781-826-5566. Website: http://www.bafound.org/support E-mail: office@bafound.org BRAIN INJURY | BRAIN TUMOR | COMA

ONLINE | TELEPHONE Brain Talk - Brain Injury Tele-Conference Support Group Telephone. Provides support and education to survivors of traumatic brain injuries through telephone groups and teleconferencing. Provides coping strategies for those who are not able to travel to on-site groups. Teleconference group meets 2nd and 4th Thurs., 7-8pm. Call Bill DeAngelo 678-880-0411 (EST) or 1-800-451-9108. Website: http://www.georgiabraintalk.com BRAIN TRUST Healing Exchange Online. Founded 1997. Mission is to exchange support and information among people affected by brain tumors and related conditions including patient-survivors, families, caregivers and health professionals. Online support groups cover a large range of brain tumors, acquired injuries and other special interest. Website: http://www.braintrust.org E-mail: info@braintrust.org Cerebellarmutism Support Online. 300+ members. Support group of parents, friends and medical practitioners of children with brain tumors (medulloblastoma, astrocytoma, ependymoma, rhabdoid, choroid papilloma as well as others) who suffered from cerebellar mutism and posterior fossa syndrome after brain tumor removal. Members can access a 52 page web based resource guide for children with brain tumors.

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Website: http://groups.yahoo.com/neo/groups/cerebellarmutism/info E-mail: cerebellarmutism-owner@yahoogroups.com DIPG Online. 630+ members. Support for parents, family and friends of children diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a brainstem glioma (tumor).

Medical professionals are also welcome. Website: http://groups.yahoo.com/neo/groups/dipg/info E-mail: dipgowner@yahoogroups.com It’s Just Benign Online. Provides information, support, advocacy, resources and a means of communication for those diagnosed with benign brain tumors. Discussion groups, message boards, social events, videos and speaking engagements. Website: http://www.itsjustbenign.org E-mail: itsjustbenign@gmail.com LGgliomakids - Low Grade Glioma Kids Online. 500+ members. Support group for parents of children with low grade gliomas of any time, including juvenile pilocytic astrocytoma (JPA), pilomxyoic astrocytoma (PMA), pleomorphic xanthoastrocytoma (PXA), fibrillary astrocytoma, oligodendroglioma or ganglioglioma, including those with multifocal or disseminated low grade gliomas. Group welcomes all location to include: brainstem, cerebellar, thalamic, hypothalamic, cerebral, tectal plate and optic pathway.

Website: http://groups.yahoo.com/neo/groups/lggliomakids/info E-mail: lggliomakids-owner@yahoogroups.com PBT Parents of Angels Online. Provides support for parents who are facing end of life issues with a child who has a brain tumor and to provide extended support for parents of children who have passed away after battling a brain tumor. Website: http://groups.yahoo.com/neo/groups/pbtangels E-mail: pbtangelsowner@yahoogroups.com BREAST IMPLANT SUPPORT

ONLINE | TELEPHONE Breast Implant Support Forum Online. 3250+ members. Support forum created to help women who have become ill from having saline or silicone implants. Provides information, support, information on explants (removal of implants) and detoxing after removal. Website: http://www.breastimplantsupport.org Saline Support Online. 2200+ members. Founded 2000. For women who have experienced health problems related to having saline or silicone gel breast implants.

Discussion of emotional struggles and effective health therapies. Website: http://groups.yahoo.com/group/salinesupport E-mail: salinesupportowner@yahoogroups.com CANCER 86

NATIONAL | INTERNATIONAL | MODEL AABCA (African American Breast Cancer Alliance) Model. 1 group in Minnesota.

Founded 1990. Support, education and advocacy for black women and men with breast cancer and their families. Provides information and referrals, education, and a support group for patients and survivors to discuss issues and concerns. Open to anyone interested in supporting and working with this grass-roots organization. Write: AABCA, P.O. Box 8981, Minneapolis, MN 55408. Call 612-825-3675; Fax: 612-8272977. Website: http://www.aabcainc.org E-mail: aabca@aabcainc.org

American Childhood Cancer Organization International. Founded 1970. Support for parents of children and adolescents with cancer, their families, adult survivors of childhood cancer and the professionals working with them. Links parents, families and groups. Provides free educational resource materials and advocates on behalf of childhood cancer. Write: American Childhood Cancer Organization, P.O. Box 498, Kensington, MD 20895-0498. Call 1-855-858-2226 or 301-962-3520; Fax: 301-9623521. Website: http://www.acco.org E-mail: staff@acco.org Beyond Boobs!, Inc. National. 10 groups in VA, NC and SC. Support and education for young women diagnosed with breast cancer before menopause. Communitybased “support systems,� create a welcoming environment for young survivors to receive peer emotional support, information, and help when needed from other members. Assists in starting new groups and also spreading breast health awareness through speaking engagements. Write: Beyond Boobs!, Inc., 1309 Jamestown Road, Suite 204, Williamsburg, VA 23185. Call 757-645-2649; Fax: 757-903-4214. Website: http://www.beyondboobs.org E-mail: checkthemout@beyondboobs.org Bladder Cancer Advocacy Network International. 30 affiliated groups. 4 regional Chapters. Founded 2005. Mission is to raise awareness of bladder cancer. Connects patients, families, friends and caregivers for support and inspiration. Fund-raising.

Helps to start groups. Online community. Write: BCAN, 4915 St. Elmo Ave., Suite 202, Bethesda, MD 20814 Call 1-888-901-BCAN or 301-215-9099. Website: http://www.bcan.org E-mail: info@bcan.org Cancer Care, Inc. National. Founded 1944. Support for cancer patients and their families. Financial assistance, information and referrals, community and professional education. On-going telephone, online and in-person support groups. Free counseling.

Write: Cancer Care, Inc., 275 Seventh Ave., New York, NY 10001. Call 1-800-8134673 (Mon.-Thurs., 9am-7pm; Fri., 9am-5pm EST); Fax: 212-712-8495. Website: http://www.cancercare.org E-mail: info@cancercare.org

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Cancer Support Community National. Support for people who are affected by cancer. Write: Cancer Support Community, 1050 17th St. NW, Suite 500, Washington, DC 20036. Call 1-888-793-9355 (helpline). Website: http://www.cancersupportcommunity.org E-mail: help@cancersupportcommunity.org Carcinoid Cancer Foundation National. Founded 1968. Provides support, information and educational materials to patients, caregivers and medical professionals dealing with carcinoid cancer and related neuroendocrine tumors.

Support groups located throughout the United States. Online support groups, e-mail and toll-free telephone support available. Conducts conferences, supports research and maintains a carcinoid and neuroendocrine tumor database. Write: Carcinoid Cancer Foundation, 333 Mamaroneck Ave., #492, White Plains, NY 10605. Call 1-888722-3132 or 914-683-1001 (Tues.-Thurs., 10am-4pm EST). Website: http://www.carcinoid.org E-mail: carcinoid@optonline.net Cholangiocarcinoma Foundation (MULTILINGUAL) International. Founded 2005.

Support for individuals who have been diagnosed with Cholangiocarcinoma (bile duct cancer) and their caregivers. Discussion board. Helps people to start local communityrun support groups. Provides free downloadable literature (has brochures in Spanish, Chinese and Japanese). Write Cholangiocarcinoma Foundation, 5526 West 13400 South, #510, Salt Lake City, Utah 84096. Call 801-999-0455; Fax 435-882-5488.

Website: http://www.cholangiocarcinoma.org E-mail: info@cholangiocarcinoma.org FORCE (Facing Our Risk of Cancer Empowered) National. Founded 1999.

Support and education for women whose family history and genetic status put them at high risk of getting ovarian or breast cancer. Open to family members. Provides resources for women to determine if they are at high risk. Forums, chats, bulletin boards, member profiles and phone support network. Write: FORCE, 16057 Tampa Palms Blvd. West, PMB#373, Tampa FL 33647. Call 1-866-288-7475. Website: http://www.facingourrisk.org E-mail: info@facingourrisk.org Hope for Two...The Pregnant with Cancer Network International. Founded 1997.

Created by three women who were diagnosed with cancer while pregnant. Mission is to let women know that they are not alone in their facing their cancer diagnosis while pregnant. Connects women who are currently pregnant with cancer with other women who have experienced a similar cancer diagnosis. Newsletter. Write: Hope for Two...The Pregnant with Cancer Network, P.O. Box 253, Amherst, NY 14226. Call 1800-743-4471. Website: http://www.hopefortwo.org E-mail: info@hopefortwo.org

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International Myeloma Foundation (IMF) International network. 100+ groups in the US. Founded 1990. Mission is to improve the quality of life of myeloma patients while working toward a prevention and a cure. Educational and supportive programs, information packets, phone support and newsletter. Networks patients together for mutual support. Referrals to self-help groups nationwide. Guidelines offered to assist those interested in starting a group. Write: International Myeloma Foundation, 12650 Riverside Dr., Suite 206, North Hollywood, CA 91607. Call 1-800-452-2873 (Mon.-Fri., 9am-4pm PST) or 818-487-7455. Fax: 818-487-7454. Website: http://www.myeloma.org E-mail: theimf@myeloma.org Intestinal Multiple Polyposis and Colorectal Cancer (IMPACC) National network.

Founded 1986. Support network to help patients and families dealing with familial polyposis and hereditary colon cancer. Provides information and referrals, encourages research, educates professionals and public. Phone support network, correspondence and literature. Write: IMPACC, c/o Ann Fagan, P.O. Box 11, Conyngham, PA 18219.

Call Ann Fagan 570-788-1818 (day) or 570-788-3712 (eve.); Fax: 570-788-4046. Email: pjfagan@epix.net Kidney Cancer Association International. Founded 1990. Provides information about kidney cancer to patients and doctors. Sponsors research and advocates on behalf of patients. E-newsletter, literature, conferences, information and referrals.

Write: Kidney Cancer Association, PO Box 4668, #38269, New York, NY 10163-4668.

Call 1-800-850-9132 or 847-332-1051 (Mon.-Fri., 9am-5pm); Fax: 847-332-2978.

Website: http://www.kidneycancer.org E-mail: office@kidneycancer.org Kids Konnected National. 17 affiliated groups. Founded 1993. Opportunity for children who have a parent with cancer to connect with other children in similar situations for support and understanding. Groups are headed by youth leaders and cofacilitated by professionals. Youth Leadership program, monthly meetings, newsletter, summer camps, information and referrals. Call 1-800-899-2866 or 949-582-5443 (24 hr.). Website: http://www.kidskonnected.org E-mail: info@kidskonnected.org

Leukemia and Lymphoma Society National. Founded 1949. Offers support groups through its local chapters for patients/family/friends affected by a by blood cancer.

Callers may request the services of a language interpreter). Write: LLS, 1311 Mamaroneck Ave., Suite 310, White Plains, NY 10605. Call 1-800-955-4572. Website: www.lls.org E-mail: infocenter@lls.org Lung Cancer Alliance National. Support and advocacy to those living with, or at risk for, lung cancer. Support services include toll-free information line, packets of lung cancer information, telephone support group, a peer-to-peer matching program, clinical 89

trial matching service and listing of lung cancer support groups across the United States and an online community support. Write: Lung Cancer Alliance, 888 16th St. NW, Suite 150, Washington, DC 20006. Call 1-800-298-2436 (9-5pm EST). Web: http://www.lungcanceralliance.org Lymphoma Research Foundation National. 18 chapters. Founded 1991. Devoted exclusively to funding lymphoma research and providing patients and healthcare professionals with critical information on the disease. Provides information and emotional support for lymphoma patients and their families. Offers free educational materials, lymphoma helpline, national buddy program, quarterly newsletter, annual patient educational forum and local seminars. Fundraises for research. Advocacy.

Some materials available in Spanish and Chinese. Write: Lymphoma Research Foundation, 115 Broadway, Ste 1301, New York, NY 10006. Call 212-349-2910 or 1800-500-9976; Fax: 212-349-2886. Website: http://www.lymphoma.org E-mail: lrf@lymphoma.org Malecare National. Prostate cancer support groups, newly diagnosed cancer support groups, advanced prostate cancer, men diagnosed under age 50 and gay cancer survivor support groups throughout the United States. Write: MaleCare, 419 Lafayette Street, 2nd floor, New York, NY, 10003. Call 212-673-4920. Website: http://malecare.org E-mail: info@malecare.org

Mothers Supporting Daughters with Breast Cancer Model. Founded 1995. Offers emotional support to the mothers of daughters newly diagnosed with breast cancer to help them to be better “care partners� to their daughters. Helps mothers cope with stress, learn about breast cancer treatment and promote breast cancer awareness.

Literature, advocacy and phone support. Write: MSDBC, 25235 Foxchase Dr., Chestertown, MD 21620. Call 410-778-1982. Website: http://www.mothersdaughters.org E-mail: msdbc@verizon.net

National Cervical Cancer Coalition International. Founded 1998. 4500+ members.

Provides on-going support system for women, family members and friends facing issues related to cervical cancer, HPV and other HPV cancers. Offers phone pal system matching women together for support, online moderated message board, newsletter, annual conferences, information and referrals. How-to materials on starting a local NCCC chapter available. Write: National Cervical Cancer Coalition, PO Box 13827, Research Triangle Park, NC 27709. Call 1-800-685-5531; Fax: 919-361-8425.

Website: http://www.nccc-online.org E-mail: nccc@ashastd.org

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Oral Cancer Foundation National. Provides support, information, advocacy and research for those with oral cancer. Write: Oral Cancer Foundation, 3419 Via Lido, Ste. 205, Newport Beach, CA, 92663. Call 949-646-8000 (Mon.-Fri., 9:30am-5pm PST).

Website: http://oralcancersupport.org/forums E-mail: info@oralcancerfoundation.org Patient Advocates for Advanced Cancer Treatments (Prostate) International.

Founded 1984. Provides support and advocacy for prostate cancer patients, their families and the general public at risk. Information relative to the advancements in the detection, diagnosis, evaluation and treatment of prostate cancer. Information, referrals, phone help, conferences and quarterly newsletter. For local support groups or help in starting a local group call them. Write: PAACT, 1143 Parmelee Ave. NW, Grand Rapids, MI 49504. Call 616-453-1477; Fax: 616-453-1846. Website: http://www.paactusa.org E-mail: paact@paactusa.org People Living Through Cancer Model. 35 groups in New Mexico. Founded 1983.

Helps cancer survivors and their loved ones make informed choices and improve the quality of life by sharing in a community of people who have “been there.” Newsletter, information and referrals, support groups and advocacy. Conducts national training for American Indians and Alaskan natives who are interested in developing cancer survivorship programs based on a grassroots program serving Pueblo Indians. Write: People Living Through Cancer, 3411 Candelaria NE, Suite M, Albuquerque, NM 87107. Call 505-242-3263; Fax: 505-242-6756. Website: http://www.pltc.org E-mail: info@pltc.org Sarcoma Alliance National. 12 groups. Provides guidance, information and support via discussion boards, peer-to-peer networking, chatroom, lists of local support groups, “how-to(s)” for starting a local group and more. Call 415-381-7236; Fax: 415-381-7235.

Write: SA, 775 East Blithedale, #334, Mill Valley, CA 94941. Website: http://sarcomaalliance.org E-mail: info@sarcomaalliance.org

SHARE: Self-Help for Women with Breast or Ovarian Cancer (BILINGUAL) Model. Founded 1976. Provides support to women with breast or ovarian cancer, their families and friends. Support groups led by trained survivors. Cutting edge educational forums and advocacy activities held throughout the five boroughs of New York City.

Write: SHARE, 1501 Broadway, Suite 704A, New York, NY 10036. Call 1-866-8912392; Breast Cancer Helpline: 212-382-2111; Ovarian Helpline: 212-719-1204; Latina Helpline Spanish: 212-719-4454; New York State Ovarian Helpline (toll-free) 1-866537-4273. Website: http://www.sharecancersupport.org Sisters Network Inc. National. Over 43 affiliate chapters. Founded 1994. African American breast cancer survivorship organization that promotes the importance of 91

breast health by empowering women through support, education, providing financial assistance and promoting early detection through mammography screenings. Write: Sisters Network Inc., 2922 Rosedale St., Houston, TX 77004. Call 1-866-781-1808 or 713-781-0255 (9am-5pm CST); Fax: 713-780-8998. Website: http://www.sistersnetworkinc.org E-mail: infonet@sistersnetworkinc.org Support for People with Oral & Head & Neck Cancer (SPOHNC) International.

100+ support groups. Founded 1991. Patient-directed support program offering information, encouragement, support, acceptance and self-expression for persons with oral, head and neck cancer. National Survivor Volunteer Network offering one-on-one support, phone support, educational programs and publications. Assistance in starting groups. Membership dues $25 (includes 8 newsletters). Write: SPOHNC, P.O. Box 53, Locust Valley, NY 11560-0053. Call 1-800-377-0928; Fax: 516-671-8794. Website: http://www.spohnc.org E-mail: info@spohnc.org ThyCa: Thyroid Cancer Survivors’ Association, Inc. National. Support, education and communication for people with all types of thyroid cancer, as well as caregivers.

Outreach to the public for thyroid cancer awareness and early detection. Twelve online support groups, local support groups, free online newsletter, free downloadable lowiodine cookbook, free patient information booklet and packet, free regional workshops, free webinars, annual international conference and free thyroid cancer awareness brochures. Thyroid Cancer Awareness Month, funding for research and educational website. Write: ThyCa: Thyroid Cancer Survivors’ Association, Inc., P.O. Box 1545, New York, NY 10159-1545. Call 1-877-588-7904; Fax: 630-604-6078. Website: http://www.thyca.org E-mail: thyca@thyca.org Us TOO International, Inc. International. 300 affiliated groups. Founded 1990. Offers support and education men and their families through fellowship and peer counseling.

Timely, personalized, unbiased and reliable information about prostate cancer. Monthly newsletter distributed through support groups and also on website. Write: Us TOO International, Inc., 2720 S. River Rd., Ste 112, Des Plaines, IL 60018. Call 1-800-8087866 or 630-795-1002 (Mon.-Fri., 9am-5pm CST); Fax: 630-795-1602. Website: http://www.ustoo.org E-mail: ustoo@ustoo.org Young Survival Coalition International. Founded 1998. Support and education for young women (age 40 and under) living with a diagnosis of breast cancer. Addresses the concerns and issues that are unique to young women and breast cancer (such as higher mortality rates, fertility issues and early menopause). Information, resources, advocacy, one-to-one Point of Contact Program and online support forums. Write: Young Survival Coalition, 80 Broad St., Suite 1700, New York, NY 10004. Call 1-877972-1011 or 646-257-3000; Fax: 646-257-3030. Website: http://www.youngsurvival.org E-mail: info@youngsurvival.org 92

ONLINE | TELEPHONE CancerCare Telephone Support Group for Caregivers * Professionally-run.

Provides support for caregivers of those diagnosed with cancer. Meetings weekly, call for more details. Program is free, pre-registration is required. Call Rick Dickens, LCSW 212-712-6126. E-mail: rdickens@cancercare.org.

CancerMatch Online. Professionally-run. Support network for those diagnosed with cancer and cancer survivors. Site gives the user the ability to create circles of individuals with common diagnosis, write one’s own journey through blog, use built-in communication services to meet or mentor others, live chat group or person-to-person chat, post face-to-face events or attend other members’ events, create and lead one’s own live chat or support group. Website: http://www.cancermatch.com E-mail: darryl@malecare.org Caring for Someone with Cancer Telephone Group Telephone. Professionally-run.

Phone-based group provides support for family and friends of patients with cancer.

Meets 1st Tues., 4-5:30pm, via toll-free conference call phone line. Pre-registration required via e-mail or phone. Call Cancer Help Line 1-800-369-6918 or Patient and Family Support Services 603-650-7751. Website: http://cancer.dartmouth.edu/support_services/caring_someone_phone.html Email: cancersupport@hitchcock.org The Colon Club Online. Provides support and education for individuals with colorectal cancer. Raises awareness of the symptoms that indicate colon cancer and provides financial assistance to young adults undergoing treatment for colon cancer. Website: http://www.colonclub.com E-mail: info@colonclub.com Duodenal Cancer Group Online. Support for individuals with Duodenal cancer, a rare cancer found in the upper portion of the small intestine. Group offers a sharing and supportive community, education, awareness as well as resources and research facilitation. Website: http://groups.yahoo.com/neo/groups/duodenalcancer/info Email: duodenalcancer-owner@yahoogroups.com The Group Loop Online. 1800+ members. Support for teens with cancer and their parents. Weekly scheduled online support groups with professionals, discussion boards, resources, information and news about many types of cancers and their affect on teens. Website: http://www.grouploop.org HER2 Support.org Online. 3,500 members. Founded 2001. Mutual support and information for breast cancer patients who over express the HER2 gene. Open to patients, caregivers, families, and spouses. Members can get free information from regional oncology nurses (call 1-866-449-HER2). Website: http://her2support.org/vbulletin

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I Had Cancer Online. 10,000 members. A cancer support community that empowers individuals to take control of life before, during and after cancer. Community support allows cancer fighters, survivors, and their caregivers to be support from those who understand. The Site allows members to search the community by type of cancer, age, year diagnosed and more. Also provided are real discussions, a blog and more.

Website: http://www.ihadcancer.com E-mail: info@ihadcancer.com Living Beyond Breast Cancer Telephone Group Telephone. Professionally-run.

Phone-based group which provides support and education for women who are beyond their initial treatment for breast cancer. Meets Wed., 5-6:30pm (8-week cycles), via tollfree conference call phone line. Pre-registration required via e-mail or phone. Call Cancer Help Line 1-800-639-6918 or Patient and Family Support Services 603-6507751. Website: http://cancer.dartmouth.edu/support_services/breast_cancer_group.html E-mail: cancersupport@hitchcock.org Lung Cancer Support Community Online. Provides an online support forum for individuals with lung cancer. Sponsored and maintained by the LUNGevity Foundation.

Write LUNGevity Foundation, 435 North LaSalle Street, Ste 310, Chicago, IL 60654.

Call 312-464-0716; Fax: 312-464-0737. Website: http://lungevity.org/l_community E-mail: info@lungevity.org Melanoma Telephone Group Telephone. Professionally-run. Phone-based group provides support for any stage of melanoma. Meets 1st Tues., 5:30-7pm, via toll-free conference call phone line. Pre-registration required via email or phone. Call Cancer Help Line 1-800-639-6918 or Patient and Family Support Services 603-650-7751.

Website: http://cancer.dartmouth.edu/support_services/melanoma_support_group.html Email: cancersupport@hitchcock.org Mesothelioma Telephonic Support Groups Telephone. Offers mesothelioma telephone support groups for patients, families and caregivers. Groups include peritoneal, chemo, caregivers, grief, extrapleural pneumonectomy (EPP)/pleurectomy decortication (PD) and spousal support. Registration required. Call 703-879-3820 (Mary Hesdorffer). Website: http://www.curemeso.org E-mail: mary@curemesso.org (When emailing let Mary know your connection to the disease and the mesothelioma support group of which you wish to participate.)

Metastatic Breast Cancer National Telephone Support Group Telephone. Provides support for women with metastatic breast cancer. Discuss issues pertaining to the diagnosis, treatment and post-treatment with women who have breast cancer. Meets 1st Mon. 8pm (EST). For instructions to register for this teleconference call Support Connection in advance. Call 1-800-532-4290 or 914-926-6402.

Ovarian Cancer National Toll-Free Telephone Support Group Telephone. Provides support for women with ovarian or gynecological cancer. Discuss issues pertaining to 94

all stages of diagnosis, treatment and post-treatment with women who have ovarian or gynecological cancer. Meets 2nd Wed., 8pm (EST). For instructions to register for this teleconference call Support Connection in advance. Call 1-800-532-4290 or 914-9626402.

Radiotherapy Damage Support Group Online. A support/discussion group for people who have suffered damage by radiotherapy treatment for cancer. This is often termed late radiation damage, as it becomes evident some time after radiotherapy has finished. Physicians and other interested persons are also welcome. Website: http://uk.groups.yahoo.com/group/radiotherapydamage E-mail: radiotherapydamage-owner@yahoogroups.co.uk Rare Cancer Alliance Online. Provides support for individuals who have rare cancers via Facebook discussion group, online forums, survivor stories and more. Publishes online e-newsletters, helps people to connect to local support groups and forums also provide information. Website: http://www.rare-cancer.org The Reluctant Brotherhood – Advanced Guys Call * Telephone. Provides support for men with prostate cancer who are in treatment. Meets 1st and 3rd Mon., 8-7pm (EST) To participate call: 323-920-0091 with the access code is 763 8947. For more information call John Teisberg 651-222-9832. Website: http://www.thereluctantbrotherhood.com/support_group.html The Reluctant Brotherhood – New Guys Call * Telephone. Provides support for men who are new to prostate cancer or are living with low risk cancer. Meets 2nd and 4th Mon., 8-7pm (EST) To participate call: 323-920-0091 with the access code is 763 8947. For more information call John Teisberg 651-222-9832. Website: http://www.thereluctantbrotherhood.com/support_group.html Thymic Cancer Online. 350+ members. Support group for all patients with thymicrelated cancers and thymomas. Website: http://health.groups.yahoo.com/group/thymic E-mail: thymicowner@yahoogroups.com Women’s Words Gynecological Cancers Telephone Group Telephone.

Professionally-run. Phone-based group provides support for women with ovarian, cervical, endometrial and fallopian cancers. Meets 1st Tues., 1-2pm, via toll-free conference call phone line. Pre-registration required via e-mail or phone. Call Cancer Help Line 1-800-639-6918 or Patient and Family Support Services 603-650-7751.

Website: http://cancer.dartmouth.edu/support_services/women_words_gynecological_ca ncer_group.html E-mail: cancersupport@hitchcock.org Young Adult Surviving Glioblastoma (YASG) Online. Provides support and inspiration to young adults in their teens, twenties, thirties and forties who are 95

diagnosed with GBM (glioblastoma multiforme), the most common primary and aggressive brain cancer. Website: http://www.yasg.org CARDIO-FACIO-CUTANEOUS SYNDROME

NATIONAL | INTERNATIONAL | MODEL CFC International International network. Incorporated in 1999. Mutual support for parents and healthcare providers of children with cardiofaciocutaneous syndrome.

Strives to find and disseminate information on CFC syndrome. Offers newsletter, information, referrals, inline listserv and phone support. Information on medical advisors and genetic testing. International clinic and family conferences every two years. Write: CFC International, 183 Brown Rd., Nestalm, NY 13850. Call 607-7729666 (eve.)

CAVERNOUS ANGIOMAS | CAVERNOUS MALFORMATION

ONLINE | TELEPHONE Angioma Alliance Forum (Multilingual) Online. Founded 2002. Provides emotional support and information for persons affected by cerebral cavernous angiomas (also known as cavernous malformations or CCM). Also provides online newsletter, and peer matching. Call 571-306-2873. Website: http://www.angioma.org Click on “Community Forum.”

CELIAC | GLUTEN INTOLERANCE

NATIONAL | INTERNATIONAL | MODEL American Celiac Society/Dietary Support Coalition National. 78 affiliated chapters. Founded 1976. Mutual support and information for celiac-sprue patients, families and health care professionals. Buddy system, visitation, phone help system, newsletter and participation in educational efforts. Also supports dermatitis herpetiformis, Crohn’s disease, lactose intolerance and other food allergies. Write: American Celiac Society, c/o Mrs. Annette Bentley, P.O. Box 23455, New Orleans, LA 70183. Call Mrs. Annette Bentley 504-737-3293. Website: http://www.americanceliacsociety.org E-mail: americanceliacsociety@yahoo.com Celiac Disease Foundation National. Founded 1990. Creates awareness and provides services and support for patients, their families, medical and healthcare professionals seeking information about celiac disease/dermatitis herpetiformis and the gluten-free diet. Free information packets. Annual membership $40. Handbook “Guidelines For a Gluten-Free Lifestyle” is included with annual membership or sold separately for $12. Members receive a quarterly newsletter and update notices of 96

upcoming events. Brochure and quick start diet guide available. Write: Celiac Disease Foundation, 20350 Ventura Blvd., Suite 240, Woodland Hills, CA 91364. Call 818-7161513 (day); Fax: 818-267-5577. Website: http://www.celiac.org Celiac Sprue Association/United States of America, Inc. National. 150+ local CSA chapters and Resource Units. Founded 1969. Provides educational materials on celiac sprue, dermatitis herpetiformis and basics for the gluten free diet for patients, parents of children with celiac sprue and professionals. Children’s camp during August in Rhode Island. CelKids network. Provides opportunities for support groups and networking with patients and professionals. Quarterly newsletter for members. Group development guidelines. Write: Celiac Sprue Association USA, P.O. Box 31700, Omaha, NE 68131-0700. Call 1-877-272-4272; Fax: 402-643-4108. Website: http://www.csaceliacs.org E-mail: celiacs@csaceliacs.org Gluten Intolerance Group of North America National network. 75+ affiliated groups. Founded 1974. Provides support to persons with gluten intolerance, celiac disease, dermatitis herpetiformis, and other gluten sensitivities, through consumer and industry services and programs that positively promote healthy lives. Offers email support, news magazine ($35), information and referral, conferences, guidance to those starting groups, and group development guidelines. Registered Dietitians are on-staff and available for telephone calls during business hours. Write: Gluten Intolerance Group, 31214 124th Ave. SE, Auburn, WA 98092. Call 253-833-6655; Fax: 253-833-6675. Website: http://www.gluten.net E-mail: customerservice@gluten.net

ONLINE | TELEPHONE Celiac Disease Online Support Group Online. A community of people whose lives are affected by celiac disease and gluten intolerance. Family and friends welcome.

Meets Mon. 9-10pm (EST) (Scheduled Moderated Chat) and Wed. 8-10pm (EST) (Unmoderated Chat). Wait in chat room for others to arrive. Website: http://forums.delphiforums.com/celiac/start CEREBROCOSTOMANDIBULAR SYNDROME

NATIONAL | INTERNATIONAL | MODEL Cerebrocostomandibular Syndrome Support Group National network. Founded 1998. Provides support and guidance to families of children with cerebrocostomandibular syndrome (recessed lower mandible and rib anomalies).

Exchange of messages through e-mail. Call 609-239-7831. E-mail: tmontague32@yahoo.com CHARCOT-MARIE-TOOTH DISEASE

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NATIONAL | INTERNATIONAL | MODEL Charcot-Marie-Tooth Association International. 65 affiliated groups. Founded 1983.

Information & support for patients & families affected by Charcot-Marie-Tooth disorders (also known as peroneal muscular atrophy or hereditary motor sensory neuropathy).

Referrals, newsletter, phone help, support groups, conferences and research.

Assistance starting similar groups. Write: Charcot-Marie-Tooth Association, PO Box 105, Glenolden, PA 19036. Call 1-800-606-2682 or 610-499-9264 (Mon.-Fri., 9am5pm EST); Fax: 610-499-9267. Website: http://www.cmtausa.org E-mail: info@cmtausa.org CHARGE SYNDROME

NATIONAL | INTERNATIONAL | MODEL CHARGE Syndrome Foundation, Inc. International network. Founded 1993.

Networking of families affected by CHARGE Syndrome (coloboma of the eye, heart malformations, atresia of the nasal passages, retardation of growth and/or development, genital hypoplasia and ear malformations). Publications include CHARGE syndrome brochure, New Parent packet (12+ pgs.), “CHARGE Syndrome: A Management Manual for Parents� (270 pgs.), Professional packet (35+ pgs.) and conference papers. Membership $25 (families); $40 (professionals) includes quarterly newsletter and parent-to-parent support. Moderated online support activities.

Conferences in odd years (e.g. 2005). Write: CHARGE Syndrome Foundation Inc., 318 Half Day Rd., #305, Buffalo Grove, IL 60089. Call 1-800-442-7604. Website: http://www.chargesyndrome.org E-mail: info@chargesyndrome.org CHIARI MALFORMATION

NATIONAL | INTERNATIONAL | MODEL American Syringomyelia & Chiari Alliance Project International network. Founded 1988. Support, networking and information for people affected by syringomyelia and Chiari malformation, their families and friends. Newsletter, phone support, pen pals and conferences. Also offers online message boards and chatrooms. Write: American Syringomyelia and Chiari Alliance Project, P.O. Box 1586, Longview, TX 75606-1586.

Call 903-236-7079 or 1-800-272-7282; Fax: 903-757-7456. Website: http://www.asap.org

ONLINE | TELEPHONE Chiari Connection International Online. Provides emotional support for Chiari and related disorders. Website: http://www.chiariconnectioninternational.com E-mail: chiariconnectioninternational-owner@yahoogroups.com 98

CHORDOMA (RARE TUMOR)

ONLINE | TELEPHONE Chordoma Support Group Living in Hope Online. 190 members. Founded 2001.

Opportunity for anyone affected by chordoma (a rare, slow growing malignant tumor that usually occurs in the spine, tail bone or base of the skull). Website: http://chordomasupport.org CHROMOSOMAL ANOMALIES

NATIONAL | INTERNATIONAL | MODEL 49XXXXY National network. Founded 1990. Mutual support and networking for families affected by 49XXXXY disorder. Information, pen pals, phone support and newsletter. Write: 49XXXXY, c/o Elise Watzka, 870 Miranda Green, Palo Alto, CA 94306. Call 650-941-2408. Website: http://klinefeltersyndrome.org/49er.htm E-mail: epwatzka@gmail.com 5P- Society International network. Founded 1987. Support organization for families having a child with 5P- syndrome (aka cri du chat), a genetic disorder characterized by a high-pitched cry. Dedicated to facilitating flow of information among affected families and medical professionals. Listing of families in U.S. and Canada. Newsletter.

Annual meeting. Write: 5P-Society, P.O. Box 268, Lakewood, CA 90714-0268. Call 1888-970-0777; Fax: 562-920-5240. Website: http://www.fivepminus.org E-mail: director@fivepminus.org Chromosome 22 Central International network. Founded 1996. Networking and support for parents of children with any chromosome 22 disorder. Supports research.

Offers literature, phone support, newsletter and e-mail support lists. Online bulletin boards. Write: Chromosome 22 Central, c/o Murney Rinholm, 7108 Partinwood Drive, Fuquay-Varina, NC 27526. Call 919-567-8167. Website: http://www.c22c.org E-mail: murney.rinholm@c22c.org Chromosome 9P- Network International network. Founded 1983. Aim is to improve the lives of families affected by 9P Deletion Syndrome (aka Alfi’s Syndrome or Monosomy 9p) by connecting families, offering knowledge and improving access to information about this rare genetic disorder. Encourages research. Fund-raises.

Publishes annual Yearbooks, and supports family reunions. Online eGroup for affected families to network and support each other. Open Facebook page for extended families, friends and professionals. Write: Chromosome 9pminus Network, PO Box 524, Appleton, WI 54912. Website: http://www.9pminus.org E-mail: 9pminusinfo@gmail.com 99

The Chromosome 18 Registry & Research Society International network. Founded 1990. Provides support and education concerning abnormalities of chromosome 18.

Encourages and conducts research into areas that impact families. Links affected families and their physicians to the research community. Newsletter, phone support, annual conference, information and referrals. Dues $20 (US); $25 (International).

Write: Chromosome 18 Registry & Research Society, 7155 Oakridge Dr., San Antonio, TX 78229. Call 210-657-4968. Website: http://www.chromosome18.org E-mail: office@chromosome18.org Chromosome Disorder Outreach, Inc. National network. Founded 1992.

Organization providing support and information to families affected by rare chromosome disorders. Membership is free. Write: Chromosome Disorder Outreach, Inc., P.O. Box 724, Boca Raton, FL 33429-0724. Call 561-395-4252; Fax: 561-3954252. Website: http://www.chromodisorder.org E-mail: info@chromodisorder.org

FRAXA Research Foundation International. 30 affiliated groups. Founded 1994.

Support and information on Fragile X syndrome. Funds medical research, investigatorinitiated grants and postdoctoral fellowships. Newsletter and literature. Some chapters have support group meetings. Guidelines available on starting a similar group. Write: FRAXA Research Foundation, 10 Prince Place, Ste. 203, Newburyport, MA 01950.

Call 978-462-1866. Website: http://www.fraxa.org E-mail: info@fraxa.org International WAGR/11p Deletion Syndrome Association International network.

Founded 2000. Provides information, encourages research and support to persons with WAGR/11p Deletion syndrome or aniridia, their families, physicians and teachers.

Literature, free bi-annual newsletter, networking, phone support, information and referrals. E-mail support group. Write: International WAGR Syndrome Association, PO Box 769, Hanover, PA 17331. Call 313-381-4302. Website: http://www.wagr.org Email: reachingout@wagr.org The National Fragile X Foundation International. Founded 1984. Mission includes phone and e-mail support, promoting awareness, education, research and legislative advocacy regarding Fragile X associated disorders (fragile x syndrome, fragile Xassociated tremor/ataxia syndrome and fragile X-associated primary ovarian insufficiency). Services include a an annual anthology, webinars, podcasts, bi-annual international conferences and educational materials (free and fee-based). Write: National Fragile X Foundation, 1615 Bonanza St., Ste 202, Walnut Creek, CA 94597.

Call 1-800-688-8765 (Mon.-Fri., 8:30am-5pm PST). Website: http://www.fragilex.org E-mail: natlfx@fragilex.org

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Tetrasomy & Pentasomy X Syndrome Information and Support Online. Founded 2002. Provides information and support for families, educators and professionals working with the families of children with Tetrasomy X and Pentasomy X Syndromes, two chromosomal disorder. Website: http://tetrasomy.com E-mail: tetra-x-listsubscribe@yahoogroups.com (to join Yahoo support group) and thomass@dca.net Turner Syndrome Society of Canada International. 5 chapters. Founded 1981.

Provides support and education to Turner syndrome patients and their families.

Publications, information book “Turner Syndrome Across the Lifespan”, referrals to U.S. and Canadian groups. Newsletter, website and Facebook page, local chapter activities and annual conference. Write: Turner Syndrome Society, 30 Cleary Ave., Rm. 9, Ottawa, ON, Canada, K2A 4A1. Call 1-800-465-6744 or 613-321-2267; Fax: 613-321-2268. Website: http://www.turnersyndrome.ca E-mail: info@turnersyndrome.ca

Turner Syndrome Society of the U.S. National. Founded 1987. Support for individuals affected by Turner syndrome. Increases public awareness and promotes research about the disorder. Write: Turner Syndrome Society U.S., 11250 West Rd., Suite G, Houston, TX 77065. Call 1-800-365-9944 or 832-912-6006; Fax: 832-9126446. Website: http://www.turnersyndrome.org E-mail: tssus@turnersyndrome.org Turner Syndrome Support Network National network. Founded 1989. Network and exchange of information for parents of children with Turner’s syndrome. Information and referrals, phone support, pen pals, conferences, literature, annual convention and newsletter. Annual membership $35/yr. (US); $50/yr. (Canada); $60/yr. (overseas).

Write: Turner Syndrome Support Network, c/o MAGIC Foundation, 6645 W. North Ave., Oak Park, IL 60302. Call 1-800-362-4423 or 708-383-0808; Fax: 708-383-0899.

Website: http://www.magicfoundation.org E-mail: mary@magicfoundation.org Unique, Understanding Chromosome Disorders International. Support for individuals, families, caregivers and professionals of individuals with chromosome disorders. Write: Unique, Unit G1, The Stables, Station Road West, Oxted, Surrey, RH8 9EE, UK. Call +44 (0) 1883 723356. Website: http://rarechromo.org E-mail: info@rarechromo.org The XXYY Project National. Provides resources for support, education, medical research and information for parents and individuals with XXYY Syndrome, a rare genetic disorder. The organization helps males with XXYY to lead purposeful and productive lives. Write: The XXYY Project, PO Box 2172, Littleton, CO 80161-2172.

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Call 1-888-503-3456 or 303-400-3456. Website: http://www.xxyysyndrome.org Email: inquiry@xxyysyndrome.org

ONLINE | TELEPHONE Bodies Like Ours | Intersex Information and Peer Support Online. 1000+ members. Primarily provides support via forums. Group seeks to end the shame and secrecy that surrounds people born intersexed and/or with atypical genitals through community and peer support. Separate messages-boards for CAH (congenital adrenal hyperplasia). AIS (Androgen Insensitivity Syndrome), MRKH (Meyer-RokitanskyKuester-Hauser syndrome), Klinefelters syndrome, chromosomal anomalies and more.

Website: http://www.bodieslikeours.org/forums Chromosome Ring 14 Support Group Online. Provides support for parents of children with Ring Chromosome 14 Syndrome, a rare human chromosome abnormality which causes a number of serious health issues, most notably recurrent treatmentresistant seizures and intellectual disability. Website: http://www.facebook.com/groups/ring14 CHRONIC GRANULOMATOUS DISEASE

NATIONAL | INTERNATIONAL | MODEL Chronic Granulomatous Disease Association, Inc. International network. Founded 1982. Support & information for persons with chronic granulomatous disease, their families & physicians. Networks patients with similar CGD-related illnesses. Support through correspondence and phone. International registry of patients. Referrals to physicians. Write: Chronic Granulomatous Disease Association, 2616 Monterey Rd., San Marino, CA 91108. Call 626-441-4118. Website: http://www.cgdassociation.org E-mail: cgda@socal.rr.com CHRONIC FATIGUE SYNDROME

ONLINE | TELEPHONE CF Alliance Online. Offers support and free international services specifically for Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME), Fibromyalgia (FM) and related illness sufferers of all ages, including their families, friends and caregivers worldwide. Online support via yahoo group, pen-pals, information and more. Website: http://www.cfalliance.org E-mail: webmaster@cfalliance.org Chronic Epstein-Barr Virus Support Forum Online. Support for individuals struggling with chronic Epstein-Barr virus. Group’s mission is providing mutual support, conquering chronic Epstein-Barr virus and broadening the medical community’s awareness. Website: http://www.cebv.org/forum

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Fibromyalgia Forum and Support Group Provides discussion forum and support group for individuals with fibromyalgia, chronic fatigue syndrome and chronic pain.

Share information and helpful tips. Website: www.fibromyalgiaforums.org CHRONIC PAIN

NATIONAL | INTERNATIONAL | MODEL American Chronic Pain Association, Inc. National. 200+ affiliated chapters.

Founded 1980. Provides peer support and education for individuals with chronic pain and their families so that they may live more fully in spite of their pain. Aim is to raise awareness among health care community, policy makers and the public about issues of living with chronic pain. Workbooks for self-help recovery, quarterly newsletter, group development guidelines, phone network and outreach program to clinics. At website, click on “About Us” to access locations of “Groups.” Write: American Chronic Pain Association, P.O. Box 850, Rocklin, CA 95677. Call 1-800-533-3231 or 916-6528192; Fax: 916-652-8190. Website: http://www.theacpa.org E-mail: acpa@theacpa.org Rest Ministries National. Evangelical-based. 300 affiliated groups. Founded 1997.

Support for people who live with chronic pain or illness and their families. Online social network “The Sunroom,” encouragement and resources for starting groups. Write: Rest Ministries, Inc., P.O. Box 502928, San Diego, CA 92150. Call 858-486-4685. Website: http://restministries.com E-mail: rest@restministries.org CLEFT PALATE | CLEFT LIP

ONLINE | TELEPHONE Adopt Cleft Online. Members 2100+. Founded 2000. Support for families who have, or want to, adopt children with cleft palate and/or cleft lip internationally. Website: http://groups.yahoo.com/group/adoptcleft E-mail: adoptcleftowner@yahoogroups.com cleftAdvocate Online. Resource for educational materials, cleft/craniofacial team information, emotional support and more. Local and regional family networking for parents, kids, teens and adults. Hosts the North American Craniofacial Family Conference for individuals and families dealing with all craniofacial conditions, including acquired facial differences (trauma, illness and disease). Website: http://www.cleftadvocate.org CONGENITAL ADRENAL HYPERPLASIA 103

NATIONAL | INTERNATIONAL | MODEL CARES Foundation Inc. International. 58 regional, international and topic-specific support groups. Founded 2001. Goal is to educate the public and professionals about all types of congenital adrenal hyperplasia, the symptoms, diagnostic protocol, treatment, genetic frequency and the necessity for early intervention through newborn screening. Offers information and support to affected individuals and their families.

Write: CARES Foundation, 2414 Morris Ave., Suite 110, Union, NJ 07083. Call 908364-0272; Fax: 908-686-2019. Website: http://www.caresfoundation.org E-mail: info@caresfoundation.org Congenital Adrenal Hyperplasia National division of MAGIC. Founded 1989. Offers educational and emotional support to families of children with congenital adrenal hyperplasia. Provides information and referrals, kids program, phone support, annual convention, networking and quarterly newsletter. Assistance in starting new groups.

Write: Mary Andrews, CAH Division of MAGIC Foundation, 6645 W. North Ave., Oak Park, IL 60302. Call 1-800-362-4423; Fax: 708-383-0899. Website: http://www.magicfoundation.org E-mail: mary@magicfoundation.org

ONLINE | TELEPHONE Adrenal Hyperplasia Network Online. Provides support for persons with Congenital Adrenal Hyperplasia (CAH), particularly adults and teenagers. Website: http://www.ahn.org.uk Bodies Like Ours | Intersex Information and Peer Support Online. 1000+ members. Primarily provides support via forums. Group seeks to end the shame and secrecy that surrounds people born intersexed and/or with atypical genitals through community and peer support. Separate messages-boards for CAH (congenital adrenal hyperplasia). AIS (Androgen Insensitivity Syndrome), MRKH (Meyer-RokitanskyKuester-Hauser syndrome), Klinefelters syndrome, chromosomal anomalies and more.

Website: http://www.bodieslikeours.org/forums Congenital Adrenal Hyperplasia Dot Com Online. Provides support via message boards for parents of children with Congenital Adrenal Hyperplasia. Website: http://www.congenitaladrenalhyperplasia.org CONGENITAL CENTRAL HYPOVENTILATION

ONLINE | TELEPHONE Congenital Central Hypoventilation Network (CCHS) Online. Founded 1990. Mutual support for families caring for a child who has congenital central hypoventilation syndrome. Provides online discussion board for families and patients, physician directory, equipment information, moderated online mutual help activities, and other 104

information. Facilitates and supports CCHS research. Holds family educational conferences every three years - see website for news on conferences. Family directory for CCHS families in the USA and around the world available to families via website.

Website: http://www.cchsnetwork.org CONGENITAL DIAPHRAGMATIC HERNIA

NATIONAL | INTERNATIONAL | MODEL Cherubs (Association of Congenital Diaphragmatic Hernia Research, Awareness and Support) International. 48 local reps who visit new patients.

Founded in 1995. Support for families of children struggling with congenital diaphragmatic hernia. Networks parents by state. Facebook group and family conferences, events and information. Links to local support. Write: Cherubs, 3650 Rogers Rd., Ste. #290, Wake Forrest, NC 27587. Call 919-610-0129. Fax: 815-4259155. Website: http://www.cherubs-cdh.org CONGENITAL NEVUS

NATIONAL | INTERNATIONAL | MODEL Nevus Network (MULTILINGUAL) International network. Founded 1983. Provides a network of support and information for people with a large brown birthmark called a giant congenital nevus and/or an associated condition called neurocutaneous melanosis. Write: Nevus Network, P.O. Box 305, West Salem, OH 44287. Call 419853-4525. Website: http://www.nevusnetwork.org E-mail: info@nevusnetwork.org Nevus Outreach, Inc. International network. Founded 1997. Dedicated to improving awareness and providing support for people affected by congenital pigmented nevi and finding a cure. Literature, 24-hour support hotline and international conferences. Write: Nevus Outreach, Inc., 600 SE Delaware, Suite 200, Bartlesville, OK 74003. Call 918331-0595 or toll-free hotline 1-877-426-3887; Fax: 281-417-4020. Website: http://www.nevus.org CORTICOBASAL GANGLIONIC DEGENERATION

ONLINE | TELEPHONE CBD (Corticobasal Ganglionic Degeneration) Support Network Online. 1580 members. Founded 1998. Support for anyone affected by corticobasal degeneration (a rare neurological disorder characterized by cell loss in the brain). Offers education, information and support. Networks members together for emotional support. Website:

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http://health.groups.yahoo.com/group/cbgd_support E-mail: cbgd_supportowner@yahoogroups.com COWDEN SYNDROME | BRRS

ONLINE | TELEPHONE PTEN World Online. Founded 2011. Provides support for individuals with Cowden Syndrome/BRRS, their families and medical providers. Members support one another via profiles and in discussion forum. Website: http://ptenworld.com CIRCUMCISION

NATIONAL | INTERNATIONAL | MODEL NORM (National Organization of Restoring Men) International. 20 affiliated groups.

Founded 1989. (meetings for MEN ONLY; information for all) Provides a safe environment in which men can, without fear of being ridiculed, share their concerns about circumcision / restoration and their desire to be intact and whole again.

Confidential discussions of goals and methods of foreskin restoration. Information and referrals, phone support and assistance in starting new groups. Write: NORM, 3205 Northwood Dr., #209, Concord, CA 94520-4506. Call 925-827-4077. Website: http://www.norm.org E-mail: waynerobb@aol.com CLOVES SYNDROME

NATIONAL | INTERNATIONAL | MODEL Cloves Syndrome Community National. Provides support via member’s stories, message boards, Facebook group and other social media groups. Click on ‘COMMUNITY’ to find support. Also has information and family conferences. Call 207281-2130. Write: CSC, PO Box 406, West Kennebunk, ME 04094. Website: http://www.clovessyndrome.org E-mail: clovessyndrome@gmail.com COCKAYNE SYNDROME

NATIONAL | INTERNATIONAL | MODEL Share and Care Cockayne Syndrome Network (MULTILINGUAL) International network. Founded 1981. Mutual support and networking for families affected by Cockayne syndrome. Sharing of information between families and professionals.

Maintains registry of families. Information, referrals, newsletter and phone support.

Website and pamphlet available in Spanish, Japanese, German and Portuguese.

Write: Share and Care Cockayne Syndrome Network, P.O. Box 282, Waterford, VA 106

20197. Call 703-727-0404. Website: http://www.cockaynesyndrome.org E-mail: cockaynesyndrome@gmail.com COFFIN-LOWERY SYNDROME

NATIONAL | INTERNATIONAL | MODEL The Coffin-Lowry Syndrome Foundation International network. Founded 1991.

Serves as a clearinghouse for information on Coffin-Lowry syndrome. Forum for exchanging experiences, advice and information with other CLS families. Seeks to become a visible group in the medical, scientific, educational and professional communities in order to facilitate referrals of newly diagnosed individuals and to encourage medical and behavioral research. Maintains mailing list of families and professionals. Provides newsletter, family support and informational packet. Write: The Coffin-Lowry Syndrome Foundation, c/o Mary Hoffman, 675 Kalmia Place NW, Issaquah, WA 98027. Call 425-427-0939 (after 5:30pm PST). Website: http://clsf.info E-mail: coffinlowry@gmail.com CORNELIA DE LANGE

NATIONAL | INTERNATIONAL | MODEL Cornelia de Lange Syndrome Foundation, Inc. National. 2500+ member families.

Founded 1981. Provides support and education to families affected by Cornelia de Lange syndrome. Supports research. Newsletter. Biennial meetings. Professional network. Write: Cornelia de Lange Syndrome Foundation, 302 West Main St., Suite 100, Avon, CT 06001. Call 1-800-223-8355 or 860-676-8166; Fax: 860-676-8337.

Website: http://www.cdlsusa.org E-mail: info@cdlsusa.org COSTELLO SYNDROME

NATIONAL | INTERNATIONAL | MODEL International Costello Syndrome Support Group International. Founded 1996.

Mutual support for parents of children with Costello syndrome. Phone support, literature, pen pals, biannual international conference, information and referrals.

Contact via website. Website: http://costellokids.com CUSHING’S DISEASE

NATIONAL | INTERNATIONAL | MODEL Cushing’s Help and Support International. Founded 2000. Support and information for persons with Cushing’s disease. Offers support to family and friends. Message 107

boards, literature, chatroom, guest speakers, annual national conference, pen pals, phone support network and advocacy. Write: Cushing’s Help and Support, 13222 Point Pleasant Dr., Fairfax, VA 22033-3515. Call 650-293-1193. Website: http://www.cushings-help.com E-mail: cushingshelp@gmail.com Cushing’s Support and Research Foundation, Inc. International. Founded 1995.

Provides support and information to patients with Cushing’s. Networking and newsletter so patients can contact others with Cushing’s. Write: Cushing’s Support Research Foundation, Inc., 60 Robins Rd., #12, Plymouth, MA 02360. Call 617-7233674 (voice/fax). Website: http://csrf.net E-mail: cushinfo@csrf.net CYCLIC VOMITING

NATIONAL | INTERNATIONAL | MODEL Cyclic Vomiting Syndrome Association International. 30+ affiliated groups.

Founded 1993. Mutual support and information for families and professionals dealing with cyclic vomiting syndrome, abdominal migraine and related disorders. Networking, phone support, educational materials, research support and newsletter. Write: Cyclic Vomiting Syndrome Association, 10520 W Bluemound Road, Milwaukee, WI 53226.

Call 414-342-7880; Fax: 414-342-8980. Website: http://www.cvsaonline.org E-mail: cvsa@cvsaonline.org CYSTIC FIBROSIS

ONLINE | TELEPHONE Cystic Fibrosis.com Online. Support and information for persons with cystic fibrosis and their families. Website: http://forum.cysticfibrosis.com CYSTINOSIS

NATIONAL | INTERNATIONAL | MODEL Cystinosis Research Network National. Founded 1996. Dedicated to supporting and advocating for continued research, providing family support and education programs. Professionals and caregivers are welcome to join. Promotes and supports research that will lead to a better understanding, improved treatments and a cure for cystinosis. Dedicated to improving awareness and education of cystinosis to be utilized as a resource for families and public. Programs include support group, networking, tollfree number, website, newsletter and family conferences. Website to improve awareness and education of cystinosis for patients, families and physicians. Nonmoderated but members must be pre-approved. Write: CRN, 302 Whytegate Ct., Lake Forest, IL 60045. Call 1-866-276-3669 or 847-735-0471; Fax: 847-235-2773. Website: http://www.cystinosis.org E-mail: info@cystinosis.org

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DANCING EYES SYNDROME

NATIONAL | INTERNATIONAL | MODEL Dancing Eye Syndrome Support Trust International network. Founded 1988.

Support and information for families of children with dancing eye syndrome (aka Kinsbourne syndrome, opsoclonus myoclonus, myoclonic encephalopathy of infants), a disorder consisting of loss of balance, irregular eye movements and muscle jerking.

Newsletter and phone help. Write: Dancing Eye Syndrome Support Trust, c/o The Secretary, 4 Glen Douglas Road, Greenock, Renfreewshire, Scotland, PA16 9NP. Call +01925-654654 (voice/fax). Website: http://www.dancingeyes.org.uk Online support: https://www.facebook.com/groups/48271703613 E-mail: support@dancingeyes.org.uk DIABETES

NATIONAL | INTERNATIONAL | MODEL American Diabetes Association (BILINGUAL) National. 100+ affiliates. Founded 1940. Seeks to prevent and cure diabetes, to improve the lives of people affected by diabetes and fundraise for research. Referrals to local support groups, offices and chapters. Dues $28 (includes magazine). Write: American Diabetes Association, 1701 North Beauregard St., Alexandria, VA 22311. Call 1-800-342-2383 (Mon.-Fri., 8:30am8pm EST); Fax: 703-549-6995. Website: http://www.diabetes.org E-mail: askada@diabetes.org

ONLINE | TELEPHONE Children with Diabetes Online. 800+ members Mutual support and information for parents of children of all ages (toddlers through young adults) with any type of diabetes. Also open to adults with diabetes, grandparents, friends, siblings, and spouses. Website: http://forums.childrenwithdiabetes.com Diabetes International Online. 1600 members. Founded 1999. Moderated mailing list for people interested, in or suffering from, diabetes. Offers support and education for problems related to diabetes and different ways to get and keep diabetes under control. Website: http://health.groups.yahoo.com/group/diabetes_int E-mail: diabetes_int-owner@yahoogroups.com Diabetes Support/Encouragement Group Online. 3200 members. Founded 1998.

Support for anyone interested in diabetes, both type 1 and 2. Opportunity to share eating plans, exercises, medications, insulin concerns and related topics. Website: http://health.groups.yahoo.com/group/diabetes E-mail: diabetesowner@yahoogroups.com

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Type-2-Diabetes Online. 3300+ members. Founded 2000. Supportive, friendly online community for individuals with, or caretakers of individuals with, type 2 diabetes.

Topics include daily trials and tribulations, diet, what works and doesn’t work. Website: http://health.groups.yahoo.com/group/type-2-diabetes E-mail: type-2-diabetesowner@yahoogroups.com DENTATORUBRAL PALLIDOLUYSIAN ATROPHY

ONLINE | TELEPHONE Dentatorubral Pallidoluysian Atrophy (DRPLA) Network Online. Founded Support and information for persons affected by dentatorubral pallidoluysian atrophy, a rare genetic disorder, that leads to physical and cognitive difficulties. Website: https://www.facebook.com/groups/144167217964 DRAVET SYNDROME

NATIONAL | INTERNATIONAL | MODEL Dravet.org - Support Forums Online. Provides support for individuals with Dravet Syndrome. Provides an online forum as well as information about Dravet Syndrome.

Call 1-866-828-1843. Website: http://dravet.org DUBOWITZ SYNDROME

NATIONAL | INTERNATIONAL | MODEL NE Dubowitz Syndrome Support National. Founded 1997. Support, information, education and networking for parents of children with Dubowitz syndrome and concerned professionals. Information on assistive technology and educational issues.

Referrals, pen pals, advocacy and information on geneticists. Write: NE Dubowitz Syndrome Support, c/o Sharon Terzian, 106 Verndale St., Warwick, RI 02889. Call 401-737-3138. Website: http://www.dubowitzsyndrome.net E-mail: dubowitzsyndrome@netzero.net DYSAUTONOMIA

NATIONAL | INTERNATIONAL | MODEL National Dysautonomia Research Foundation National. Provides support via Discussion Forum and Medical Network. Call 651-267-0525; Fax: 651-267-0524.

Write: NDRF, PO Box 301, Red Wing, MN 55066-0301. Website: http://www.ndrf.org E-mail: ndrf@ndrf.org

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Dysautonomia Youth Network of America, Inc. (DYNA) (MULTILINGUAL) International network. Founded 1999. Provides young patients (under 26) with a support and outreach network focused on positive peer support. Strives to heighten awareness of dysautonomia conditions (postural orthostatic tachycardia syndrome, neurally mediated hypotension, neurocardiogenic syncope, vasovagal syncope, generalized dysautonomia, birth dysautonomia, non-familial dysautonomia and postviral dysautonomia) within the pediatric and adolescent medical communities.

Newsletter, literature (English, Spanish, Italian), pen pal program, moderated message board and national conference. Membership is free. Write: DYNA, 1301 Greengate Court, Waldorf, MD 20601. Call 301-705-6995; Fax: 301-638-3962. Website: http://www.dynainc.org E-mail: info@dynainc.org FD NOW National. Provides support to parents, families and others interested in dysautonomia. Networking and funding for familial dysautonomia research.

Information and newsletter. Write: Ann Slaw, c/o FD NOW, 1170 Green Knolls Dr., Buffalo Grove, IL 60089. Call 847-913-0455. Website: http://www.fdnow.org National Society for MVP and Dysautonomia National. 54 affiliated groups.

Founded 1987. Assists individuals suffering from mitral valve prolapse syndrome and dysautonomia to find support and understanding. Education on symptoms and treatment. Newsletter and literature. Write: National Society for MVP and Dysautonomia, 880 Montclair Rd., Suite 370, Birmingham, AL 35213. Call 205-5925765 or 1-800-541-8602; Fax: 205-592-5707. Website: http://www.mvprolapse.com E-mail: staff@mvprolapse.com DYSTONIA

NATIONAL | INTERNATIONAL | MODEL Dystonia Medical Research Foundation International. 110 chapters. Founded 1976. Provides education, awareness and support groups for persons with dystonia.

Fundraises for research. Newsletter, information and referrals to local groups. Write: Dystonia Medical Research Foundation, One East Wacker Dr., Suite 2810, Chicago, IL 60601-1905. Call 1-800-377-3978 or 312-755-0198 (Mon.-Fri., 8:30am-4:30pm CST); Fax: 312-803-0138. Website: http://www.dystonia-foundation.org E-mail: dystonia@dystonia-foundation.org DYSTROPHIC EPIDERMOLYSIS BULLOSA

NATIONAL | INTERNATIONAL | MODEL

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DebRA of America (Dystrophic Epidermolysis Bullosa Research Association) National network. Founded 1980. Support and information for families affected by Epidermolysis Bullosa. Provides education for patients, families and professionals; emergency financial support, emergency wound care supplies; New Family Advocate program; newsletter, biennial national conference, information and referrals. Promotes research for a cure. Write: DebRA of America, 75 Broad St., Suite 300, New York, NY 10004. Call 212-868-1573 or 1-855-287-3432; Fax: 212-868-9296. Website: http://www.debra.org E-mail: staff@debra.org or nurse@debra.org EATING DISORDERS

NATIONAL | INTERNATIONAL | MODEL Eating Addictions Anonymous - SANE Fellowship National. 6 affiliated chapters.

12-Step. Recovery program for men and women recovering from all forms of eating and body image addictions. Includes anorexia, bulimia, binge eating, overeating, exercise bulimics, etc. Focuses on internal growth and reclaiming bodies rather than weight or appearance. Write: Eating Addictions Anonymous, 1501 Allison St. NW, Washington, DC 20011-7015. Call 202-882-6528. Website: http://www.eatingaddictionsanonymous.org E-mail: 12n12@tidalwave.net Eating Disorders Anonymous 12-Step. International. Founded 2000. Fellowship of men and women who share their experience, strength and hope with each other that they may solve their common problems and help others to recover from their eating disorders. Focuses on the solution; not the problem. Endorses sound nutrition.

Literature, information and meeting listings available at http://www.4EDA.org.

Assistance in starting groups available at http://www.4EDA.org/startmeeting. Offers online referrals to local groups. Website: http://www.4EDA.org Food Addicts In Recovery Anonymous International. Founded 1998. 12-Step.

Fellowship addressing all forms of food addiction, e.g. undereating, overeating and bulimia through purging and/or exercise. FA members are all ages and walks of life.

Literature, phone support, assistance in starting new groups and online listing of meetings. Write: Food Addicts In Recovery Anonymous, 400 West Cummings Park, Suite 1700, Woburn, MA 01801. Call 781-932-6300; Fax: 781-932-6322. Website: http://www.foodaddicts.org E-mail: fa@foodaddicts.org

National Association of Anorexia Nervosa & Associated Disorders, Inc. National. Founded 1976. Provides information on over 140+ free ANAD support groups, referrals to therapists and treatment centers that specialize in eating disorders.

Assists individuals in the formation of self-help support groups. Quarterly newsletter.

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Telephone helpline for all those affected by eating disorders. Online Discussion forum and volunteer Resource People. School Guidelines program for teachers, administrators and school health staff. Write: National Association of Anorexia Nervosa and Associated Disorders, 750 E. Diehl, Suite 127, Naperville, IL 60563. Call 630-5771330. Website: http://www.anad.org E-mail: anadhelp@anad.org Overcomers Outreach, Inc. International. 700 affiliated groups. Founded 1985. 12Step. Christ-centered. Support for anyone affected by addictions, as well as their families and friends. Uses 12-steps of A.A. and applies them to the Scriptures. Uses Jesus Christ as “higher power”. Supplements involvement in other 12-step groups.

Newsletter, group development guidelines and conferences. Write: Overcomers Outreach, Inc., 12828 Acheson Dr., Whittier, CA 90601. Call 1-800-310-3001. Website: http://www.overcomersoutreach.org E-mail: info@overcomersoutreach.org Recoveries Anonymous 12-Step. International. 50 chapters. 12-Step. Spiritual recovery group for anyone seeking a solution for any kind of addiction, problem or behavior. Families and friends welcome. Face-to-face and telephone meetings available. For information visit website and click on “Meetings” tab or “Contact Us” tab.

Free “How To Begin...” guides and “Start A Group” kit can be downloaded from the website. Write: R.A. Universal Services, P.O. Box 1212, East Northport, NY 11731.

Website: http://www.r-a.org E-mail: ra@r-a.org ECTODERMAL DYSPLASIAS

NATIONAL | INTERNATIONAL | MODEL National Foundation for Ectodermal Dysplasias National network. Founded 1981.

Distributes information on ectodermal dysplasia syndrome and treatments. Provides support programs for families and funds research projects. Quarterly newsletter.

Annual family conference and regional conferences, dental implant program and scholarship opportunities. Directory of members for informal contacts among families.

Write: National Foundation for Ectodermal Dysplasias, 6 Executive Dr., Ste 2, Fairview Heights, IL 62208-1360. Call 618-566-2020; Fax: 618-566-4718. Website: http://www.nfed.org E-mail: info@nfed.org ECZEMA

NATIONAL | INTERNATIONAL | MODEL National Eczema Association National network. Founded 1988. Provides support for persons with atopic dermatitis as well as other forms of eczema. Promotes education and research. Offers networking, newsletter, information and referrals.

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Write: National Eczema Association, 4460 Redwood Highway, Suite 16-D, San Rafael, CA 94903-1953. Call 1-800-818-7546 or 415-499-3474; Fax: 415-472-5345. Website: http://www.nationaleczema.org E-mail: info@nationaleczema.org EHLERS-DANLOS SYNDROME

NATIONAL | INTERNATIONAL | MODEL Ehlers-Danlos National Foundation National. 35 local groups. Founded 1985.

Provides resources for Ehlers-Danlos syndrome patients, families and health care professionals. Mission is to disseminate accurate information, provide a network of support and communication and to foster research. Online message boards for EDNF members. Write: EDNF, 7918 Jones Branch Dr., Suite 300, McLean, VA 22102. Call 703-506-2892; Fax 703-506-3266 Website: http://www.ednf.org E-mail: ednfstaff@ednf.org ENCEPHALITIS

NATIONAL | INTERNATIONAL | MODEL Encephalitis Society Resource Centre, The International network. Founded 1994.

Provides support and information for persons with Encephalitis (inflammation of the brain) and their families. Aims to educate public and professionals about the condition.

Newsletter, information and referrals. Write: Encephalitis Society Resource Centre, The 32 Castlegate Malton, North Yorkshire, YO17 7DT UK. Call +44 (0) 1653 699 599 (voice/fax). Website: http://www.encephalitis.info E-mail: mail@encephalitis.info

ONLINE | TELEPHONE Encephalitis Global Online. An alliance connecting encephalitis survivors and caregivers around the world. Strives to raise awareness aiming to promote swift diagnosis, to alleviate unnecessary suffering and to prevent untimely death. Website includes a guide for newly diagnosed persons, links, downloadable information pamphlet and an active discussion forum. Website: http://www.encephalitisglobal.org E-mail: admin@encephalitisglobal.org ENDOMETRIOSIS

NATIONAL | INTERNATIONAL | MODEL Endometriosis Association (MULTILINGUAL) International. Founded 1980. Selfhelp organization that educates the public and medical community about endometriosis. Funds and promotes research projects. Newsletters, books, literature, support group information, teen programs and network. Brochures in 30+ languages.

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Crisis call listeners and e-mail support. Write: Endometriosis Association, 8585 N. 76th Pl., Milwaukee, WI 53223. Call 1-800-992-3636 (for an information packet) or 414-3552200; Fax: 414-355-6065. Website: http://www.endometriosisassn.org E-mail: endo@endometriosisAssn.org EOSINOPHALIC DISORDERS

NATIONAL | INTERNATIONAL | MODEL American Partnership for Eosinophilic Disorders (Apfed) National. Founded 2001. Dedicated to connecting the Eosinophic community by connecting them with local support where available and via email. Education, awareness, support and research for individuals, patients and their families coping with eosinophilic disorders.

Strives to expand education, create awareness and fund research while promoting advocacy among its members. Write: APFED, PO Box 29545, Atlanta, GA 30359. Call 713-493-7749 (8am-4pm CST, Mon-Fri) Website: http://apfed.org/drupal/drupal/support_groups E-mail: mail@apfed.org EPILEPSY | CONVULSIVE DISORDERS

NATIONAL | INTERNATIONAL | MODEL Epilepsy Foundation (BILINGUAL) National. 47 affiliates. Founded 1967.

Information and support for people with epilepsy, their families and friends. Publishes a wide range of informational materials for people of all ages. Referrals to local affiliates (many of which have employment-related programs, support groups and other human service programs). Write: Epilepsy Foundation, 8301 Professional Place East, Landover, MD 20785. Call 301-459-3700; 1-800-332-1000; 24/7 Information and Referral / Professional Library: 1-800-332-1000; Spanish Speakers Only: 1-866-7488008; Fax: 301-577-2684. Website: http://www.epilepsy.com E-mail: info@efa.org ERECTILE DYSFUNCTION AND IMPOTENCE

ONLINE | TELEPHONE Bodies Like Ours | Intersex Information and Peer Support Online. 1000+ members. Primarily provides support via forums. Group seeks to end the shame and secrecy that surrounds people born intersexed and/or with atypical genitals through community and peer support. Separate messages-boards for CAH (congenital adrenal hyperplasia). AIS (Androgen Insensitivity Syndrome), MRKH (Meyer-RokitanskyKuester-Hauser syndrome), Klinefelters syndrome, chromosomal anomalies and more.

Website: http://www.bodieslikeours.org/forums Erectile Dysfunction Support Forum Online. A safe-place for men to discuss their erectile dysfunction. Erectile Dysfunction (ED) affects millions of men in the United States, yet it is one of the least discussed and least treated conditions among men.

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EDForum.org is a peer-lead online support group and information sharing community.

Group administrator is Darryl. Website: http://edforum.org Gay Men with Erectile Dysfunction and Impotence Forum Online. Provides support and information sharing through their discussion forum group community. Works to help gay men help each other about Erectile Dysfunction. Website: http://www.gayed.org The Peyronie’s Disease Society Online. 1500+ members. Provides support for men with Peyronies Disease, sometimes called Induratio Penis Plastica (IPP), is actually a scarring condition that results in deformity of the penis (typically, onset of a bent or curved penis). Website: http://www.peyroniessociety.org; http://www.peyroniessociety.org/wormensforum.htm (Women’s Forum); and http://www.peyroniesforum.net (Men’s Forum) E-mail: admin@peyroniessociety.org and christine@peyroniessociety.org (Women’s forum moderator) Retarded Ejaculation Disorder (RED) Support Group Online. A safe place to share experiences with this disorder, causes, success stories with therapy and/or treatment, coping and how it affects daily life. Retarded Ejaculation Disorder (RED) or Delayed Ejaculation is the inability for a man to ejaculate, a rare disorder affecting less than 23% of males. Website: http://groups.yahoo.com/neo/groups/retarded_ejaculation_therapy/info E-mail: retarded_ejaculation_therapy-owner@yahoogroups.com ERYTHROMELALGIA

NATIONAL | INTERNATIONAL | MODEL The Erythromelalgia Association (TEA) International network. Founded 1999.

Provides support and information to those diagnosed with erythromelalgia. Offers education to increase awareness of this rare condition within the medical profession and the general public. Fundraises to promote research into the causes, diagnostic methods and treatments. Write: The Erythromelalgia Association, 200 Old Castle Lane, Wallingford, PA 19086. Call 610-566-0797. Website: http://www.burningfeet.org or http://www.erythromelalgia.org ESSENTIAL TREMOR

NATIONAL | INTERNATIONAL | MODEL International Essential Tremor Foundation International. 80 affiliated groups.

Founded 1989. Provides information and support for persons affected by essential tremor. Literature, quarterly newsletter, research updates, information and referrals.

Funds research and raises awareness about the disorder. Dues $30/yr. Write: 116

International Essential Tremor Foundation, P.O. Box 14005, Lenexa, KS 66285. Call 1888-387-3667 or 913-341-3880; Fax: 913-341-1296. Website: http://www.essentialtremor.org FABRY DISEASE

NATIONAL | INTERNATIONAL | MODEL Fabry Support & Information Group National network. Founded 1996. Provides emotional support through member networking. Maintains library of information on Fabry disease to help educate families and professionals. Online discussion board.

Facebook page. Write: FSIG, PO Box 510, 108 NE 2nd St., Suite C, Concordia, MO 64020. Call 660-463-1355; Fax: 660-463-1356. Website: http://www.fabry.org E-mail: info@fabry.org FACIAL DIFFERENCES

NATIONAL | INTERNATIONAL | MODEL AmeriFace National. Founded 1991. Provides emotional support and information to persons with facial differences and their families. Network includes families who have similar concerns. Promotes public education and awareness. Also has cleftAdvocate program which provides online parent-patient support network. Newsletter, information and referrals. Write: AmeriFace, P.O. Box 751112, Las Vegas, NV 89136. Call 1-888486-1209 or 702-769-9264 (Mon.-Fri., 8am-5pm PST); Fax: 702-341-5351. Website: http://www.ameriface.org E-mail: info@ameriface.org Apert International, Inc. International. Provides support and information for those who have Apert Syndrome, a genetic craniofacial (and sometimes includes BIM(s)) defect. Website has listserv, chat-room, pen-pals and forum. Write: Apert International, PO Box 2571, Columbia, SC 29202. Call 803-732-2372. Website: http://www.apert.org E-mail: info@apert-international.org FATTY OXIDATION DISORDER

NATIONAL | INTERNATIONAL | MODEL FOD Family Support Group International network. Founded 1991. Opportunity for families dealing with fatty oxidation disorders (i.e. MCAD, LCHAD, VLCAD, SCAD, etc.) to network with others dealing with these rare, genetic metabolic disorders. Phone support, e-mail list, Facebook group, information, referrals and National Conference every 2 years. Write: FOD Family Support Group, P.O. Box 54, Okemos, MI 48805.

Call 517-381-1940; Fax: 866-290-5206. Website: http://www.fodsupport.org E-mail: deb@fodsupport.org 117

FETAL ALCOHOL SYNDROME DRUG-AFFECTED

NATIONAL | INTERNATIONAL | MODEL FEN (Family Empowerment Network) National network. Founded 1992. Support, education, advocacy and training for families of children and adults with fetal alcohol spectrum disorders (FASD) or fetal alcohol effects and interested professionals. Fetal alcohol spectrum disorder resources, education and referrals for diagnosis. Networks families together for support. Assistance in starting support groups. Write: Family Empowerment Network, c/o University of Wisconsin, Department of Family Medicine, 1100 Delaplaine Ct., Madison, WI 53715. Call 1-800-462-5254 or 608-262-6590; Fax: 608-263-5813. Website: http://www.pregnancyandalcohol.org FIBRODYSPLASIA OSSIFICANS PROGRESSIVA

NATIONAL | INTERNATIONAL | MODEL International FOP Association, Inc. International network. Founded 1988. Serves as a support network for families dealing with fibrodysplasia ossificans progressiva (FOP). Supports education, communication and medical research. Newsletter. Write: International FOP Association, Box 196217, Winter Springs, FL 32719-6217. Call 407365-4194; Fax: 407-365-3213. Website: http://www.ifopa.org E-mail: denise.vietti@ifopa.org FIBROMUSCULAR DYSPLASIA

NATIONAL | INTERNATIONAL | MODEL Fibromuscular Dysplasia Society of America, The National. Provides support for affected persons and their families. Provides the opportunity to meet others who have also been diagnosed with fibromuscular dysplasia. Write: FMDSA, 20325 Center Ridge Road, Suite 620, Rocky River, OH 44116. Call 216-834-2410 or 1-888-709-7089.

Website: http://www/fmdsa.org/patient_support/support_groups and for the FMD Inspire Support Group Online: http://www.inspire.com/groups/fibromusculardysplasia-society-of-america E-mail: admin@fmdsa.org For questions about the groups please contact Maureen Womack at maureen.womack@fmdsa.org FIBROMYALGIA

NATIONAL | INTERNATIONAL | MODEL National Fibromyalgia Association National network. Develops and executes programs dedicated to improving the quality of life for people with fibromyalgia by increasing the awareness of the public, media, government and medical communities.

Patient assistance, information programs, awareness outreach, support groups 118

directory and quarterly magazine. Write: National Fibromyalgia Association, 1000 Bristol St. N, Ste 17-247 Newport Beach, CA 92660. Website: http://www.fmaware.org

ONLINE | TELEPHONE CF Alliance Online. Offers support and free international services specifically for Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME), Fibromyalgia (FM) and related illness sufferers of all ages, including their families, friends and caregivers worldwide. Online support via yahoo group, pen-pals, information and more. Website: http://www.cfalliance.org Fibromyalgia Forum and Support Group Provides discussion forum and support group for individuals with fibromyalgia, chronic fatigue syndrome and chronic pain.

Share information and helpful tips. Website: www.fibromyalgiaforums.org LivingWithFibro Online. Provides a community of support for patients affected by fibromyalgia, as well as family and friends. Site includes groups, blogs, forums and more. Website: http://www.livingwithfibro.org Men With Fibromyalgia Online. 700+ members. Support, fellowship and information for men with fibromyalgia. Opportunity to learn, share, listen, offer and receive support.

Spouses and loved ones welcome. Offers forum and chatroom. Website: http://www.menwithfibro.com E-mail: admin@menwithfibro.com FLOATING HARBOR SYNDROME

NATIONAL | INTERNATIONAL | MODEL Floating Harbor Syndrome Support Group National network. Founded 1999.

Provides mutual support and networking for parents of children with Floating Harbor syndrome. Newsletter, literature, phone support and photos of children with FHS. Write: Floating Harbor Syndrome Support Group, c/o Deana Swanson, P.O. Box 124, Rosebud, TX 76570. Call 254-721-8148 Website: http://www.floatingharborsyndromesupport.com E-mail: littleflock7@gmail.com GALACTOSEMIA

NATIONAL | INTERNATIONAL | MODEL Galactosemia Foundation National network. Founded 1985. Information and mutual support for parents of galactosemic children. Publications, pen pals, conferences, phone support and online message board. Write: Galactosemia Foundation, P.O. Box

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1512, Deerfield Beach, FL 33443. Call 1-866-900-7421. Website: http://www.galactosemia.org E-mail: president@galactosemia.org GASTROINTESTINAL STROMAL TUMOR

ONLINE | TELEPHONE GIST Support International Online. International. Provides support and education for persons with gastrointestinal stromal tumors, their family, friends and caregivers. Write: GIST Support International, 12 Bomaca Dr., Doylestown, PA 18901. Call 215-3409374. Website: http://www.gistsupport.org GAUCHER DISEASE

NATIONAL | INTERNATIONAL | MODEL National Gaucher Foundation National. Founded 1984. Provides information and financial assistance for those affected by Gaucher disease. Provides education and outreach to increase public awareness. Quarterly newsletter, phone support and medical board. Write: National Gaucher Foundation, 61 General Early Dr., Harpers Ferry, West Virginia 25425. Call 1-800-504-3189; Fax: 770-934-2911. Website: http://www.gaucherdisease.org E-mail: ngf@gaucherdisease.org GENERAL INFECTIOUS ILLNESS

NATIONAL | INTERNATIONAL | MODEL PKIDs (Parents of Kids with Infectious Diseases) National network. Founded 1996. Provides informational and educational support for parents of children with chronic viral infectious diseases, with an emphasis on Hepatitis B and C. Opportunity for parents, children and teens to share information and experiences. Publications, advocacy and phone support. Online e-mail list, support group and other resources.

Write: PKIDS, P.O. Box 5666, Vancouver, WA 98668. Call 1-877-557-5437 or 360695-0293; Fax: 360-695-6941. Website: http://www.pkids.org E-mail: pkids@pkids.org GENERAL RARE DISORDERS

NATIONAL | INTERNATIONAL | MODEL Hearts and Hands Model. 1 group in NC. Founded 1993. Emotional, spiritual and educational support for persons with either rare or undiagnosed illnesses and their families. Special interest in loin pain hematuria syndrome. Write: Hearts and Hands,

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c/o Winoka Plummer, 1648 Oliver’s Crossing Circle, Winston-Salem, NC 27127. Call 336-785-7612.

National Organization for Rare Disorders (NORD) National network. Founded 1983. Information and networking for persons with any type of rare disorder. Literature, information and referrals. Advocacy for orphan diseases. Networks persons or families with the same disorder for support. Guidelines available for starting similar groups.

Write: NORD, 55 Kenosia Ave., Danbury, CT 06810. Call 1-800-999-6673 or 203-7440100; TDD: 203-797-9590; Fax: 203-798-2291. Website: http://www.rarediseases.org E-mail: orphan@rarediseases.org GLYCOGEN STORAGE DISEASE

NATIONAL | INTERNATIONAL | MODEL Association For Glycogen Storage Disease U.S. and Canadian network. 13 affiliated groups. Founded 1979. Mutual support and information sharing among parents of children and patients with glycogen storage disease. Fosters communication between parents, patients and professionals, creates public awareness and encourages research. Offers GSDnet support group via e-mail. Newsletter, phone support and annual family/professional conference. Write: Association for Glycogen Storage Disease, P.O. Box 896, Durant, IA 52747. Call 563-514-4022. Website: http://www.agsdus.org E-mail: info@agsdus.org GLYCOPROTEIN STORAGE DISEASE

NATIONAL | INTERNATIONAL | MODEL International Advocate for Glycoprotein Storage Disease (ISMR) International network. Founded 1999. Provides practical support for families affected by any glycoprotein storage disease. Offers educational resources for medical community.

Promotes research to develop treatments. Phone support, literature, family networks, newsletter, advocacy, online message boards, chatrooms, e-mail discussions, information and referrals. Website: http://www.ismrd.org E-mail: info@ismrd.org GORLIN SYNDROME | BASAL CELL CARCINOMA NEVUS SYNDROME

NATIONAL | INTERNATIONAL | MODEL Basal Cell Carcinoma Nevus Syndrome Life Support Network International network. Provides support services to patients, families and medical professionals dealing with the many manifestations of Basal Cell Carcinoma Nevus Syndrome (aka Gorlin Syndrome or Nevoid Basal Cell Syndrome). Offers: online forum; Quarterly Advocate newsletter; annual retreats; interdisciplinary conferences; periodic 121

educational regional meetings; for families, caregivers, healthcare professionals, to develop and encourage a working knowledge of this complex condition in order to understand treatment options; provide clinical trial enrollment opportunities; increase family history awareness and develop self-esteem. Write: BCCNS Life Support Network, 14525 North Cheshire St., P.O. Box 321, Burton, OH 44021. Call 440-8340011 (Mon.-Fri., 8am-3pm); Fax: 440-834-0132. Website: http://www.gorlinsyndrome.org E-mail: info@bccns.org GRAVES’ DISEASE

NATIONAL | INTERNATIONAL | MODEL Graves’ Disease and Thyroid Foundation National. 15 affiliated groups. Founded 1990. Aim is to establish patient-based Graves’ disease and thyroid exclusive support groups to provide better treatment and to increase public awareness. Participates in research. Newsletter, information and referrals, phone support, national conferences, internet bulletin board. Guidelines available to assist in starting a similar group. Write: Graves’ Disease and Thyroid Foundation, P.O. Box 2793, Rancho Santa Fe, CA 92067. Call 1-877-643-3123. Website: http://www.gdatf.org E-mail: info@gdatf.org GUILLAIN-BARRE SYNDROME

NATIONAL | INTERNATIONAL | MODEL GBS/CIDP Foundation International International. 185 chapters. Founded 1980.

Emotional support, hospital visitation and education for people affected by GuillainBarre syndrome, CIDP (chronic inflammatory demyelinating polyneuropathy) and its variants. Promotes support, education and research. Newsletter, pen pals, phone network and online chatroom. Group development guidelines and international symposium. Write: GBS/CIDP Foundation International, The Holly Building, 104 ½ Forrest Ave., Narberth, PA 19072. Call 610-667-0131 or 1-866-224-3301 (9am-3:30pm EST); Fax: 610-667-7036. Website: http://www.gbs-cidp.org

ONLINE | TELEPHONE Guillain-Barre Support Online. Support for persons struggling with Guillain-Barre.

Opportunity to connect to others to know that you are not alone. Open to patients, spouses, parents, siblings and friends. Chat room and message board. Website: http://www.guillainbarresupport.org HEART DISEASE

NATIONAL | INTERNATIONAL | MODEL

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Children’s Cardiomyopathy Foundation National. Supports families affected by all forms of pediatric cardiomyopathy through research, public awareness and advocacy, family support services and education. Family support services include a private listserv, support groups and phone calls to support members and help them connect with healthcare professionals as well as families in similar situations. CCF’s Family Assistance Program helps qualifying families in need of financial assistance with cardiomyopathy-related expenses. Additionally, an extensive collection of educational material is available. Write: Children’s Cardiomyopathy, P.O. Box 547, Tenafly, NJ 07670. Call 1-866-808-2873. Website: http://www.childrenscardiomyopathy.org Email: info@childrenscardiomyopathy.org Hypertropic CardioMyopathy Association, The Offers support for those with hypertropic cardiomypathy (a genetic condition where the heart muscle become thick).

Write: Hypertropic Cardiomyopathy Association, 18 East Main St., Suite 202, Denville, NJ 07834. Call 973-983-7429. Fax 973-983-7870. Website: http://www4hcm.org or online support forum http://www.4hcm.org/forums/forum.php Kids With Heart National. 3 affiliated groups. Founded 1985. Mutual support for families and adults affected by congenital or acquired heart defects. Also provides bereavement services. Matches parents together for support, referrals to local support groups nationwide. Promotes public awareness of congenital heart defects. Books, awareness products, advocacy assistance and assistance in starting groups. Write: Kids With Heart NACHD, Inc., 1578 Careful Dr., Green Bay, WI 54304. Call 1-800-5385390 (US only) or 920-498-0058 (voice/fax) (Mon.-Fri., 8am-3pm CST). Website: http://www.kidswithheart.org E-mail: michelle@kidswithheart.org Little Hearts National network. Founded 1998. Provides support, resources, networking, and hope to families affected by congenital heart defects. Provides discussion board, news email group, parent matching program, and annual picnic.

Write: Little Hearts, Inc., P.O. Box 171, Cromwell, CT 06416. Call 1-866-435-4673.

Website: http://www.littlehearts.org Mended Hearts National. 285 chapters. Founded 1951. Mutual support for persons who have heart disease, their families, friends and other interested persons. Quarterly magazine and chapter development kit. Write: Mended Hearts, 8150 North Central Expressway, M2248, Dallas, TX 75206. Call 1-888-432-7899 or 214-296-9252; Fax: 214-296-9252. Website: http://www.mendedhearts.org E-mail: info@mendedhearts.org National Society for MVP and Dysautonomia National. 54 affiliated groups.

Founded 1987. Assists individuals suffering from mitral valve prolapse syndrome and dysautonomia to find support and understanding. Education on symptoms and 123

treatment. Newsletter and literature. Write: National Society for MVP and Dysautonomia, 880 Montclair Rd., Suite 370, Birmingham, AL 35213. Call 205-5925765 or 1-800-541-8602; Fax: 205-592-5707. Website: http://www.mvprolapse.com E-mail: staff@mvprolapse.com

SADS Foundation International. 5 affiliated groups. Founded 1992. Works to save the lives of young persons who are predisposed to sudden death due to cardiac arrhythmia. Offers networking, newsletter, literature, advocacy, information, online and phone support and referrals. Write: SADS Foundation, 508 E. South Temple, Suite 202, Salt Lake City, UT 84102. Call 1-800-786-7723 or 801-531-0937; Fax: 801-5310945. Website: http://www.stopsads.org or http://www.inspire.com/groups/sadsfoundation E-mail: sads@sads.org Society for Mitral Valve Prolapse Syndrome International. 23 affiliated groups.

Founded 1991. Provides support and education to patients, families and friends about mitral valve prolapse syndrome. Newsletter, phone support, literature, conferences and support group meetings. E-publishes “Survival Guide.� Offers guidelines to start similar groups. Write: Society for MVP Syndrome, P.O. Box 431, Itasca, IL 60143-0431. Call 630-250-9327; Fax: 630-773-0478. Website: http://www.mitralvalveprolapse.com E-mail: bonnie0107@aol.com Syncope Trust And Reflex Anoxic Seizures (STARS-US) National. Founded 2006.

Provides support, information and networking for individuals, families and individuals on syncope conditions. Information and support also offered via Facebook and Health Unlocked message board. Call 843-785-4101. Write: STARS-US, PO Box 5507, Hilton Head Island, SC 29938. Website: http://www.stars-us.org E-mail: info@stars-us.org

ONLINE | TELEPHONE Congenital Heart Information Network Online. Offers support, information and resources to families of children with congenital heart defects, acquired heart disease and adults with congenital heart defects. Also open to interested professionals.

Website: http://www.tchin.org Wired4Life Online. Community provides support, education, friendship and a sharing safe-haven for women with implanted cardiac devices. Groups (including five private/secret groups on Facebook), newsletter (6x per yr.) which includes implanted device education, Heart Smarts column written by a cardiac nurse/wired sister, member stories and more. Website: http://wired4life.net E-mail: dawnhuberty@wired4life.net WomenHeart Online. Support for women with heart disease, their family and friends.

Website: http://www.womenheart.org E-mail: mail@womenheart.org 124

Pacemaker Club Online. Founded 2000. Support community that helps pacemaker and implantable cardioverter defibrillator (ICD) recipients meet, share information and support each other. Website: http://www.pacemakerclub.com Facebook: http://www.facebook.com/pacemakerclub E-mail: info@pacemakerclub.com Sudden Cardiac Arrest Association Online. Founded 2005. Support for persons who have suffered sudden cardiac arrest, have an implantable defibrillator, provide emergency or medical treatment related to cardiac arrest, are family or caregivers of someone who suffered a cardiac arrest, or are interested in reducing sudden cardiac arrests. Website: http://suddencardiacarrest.org Click on “Resources” then “Online Community.”

HELLP SYNDROME

NATIONAL | INTERNATIONAL | MODEL Preeclampsia Foundation International network. Founded 2000. Provides patient support and education, raises public awareness and catalyzes research and works to improve health care practices to reduce maternal and infant illness and death due to preeclampsia and other hypertensive disorders or pregnancy. Write: Preeclampsia Foundation, 6905 North Wickham Rd., Suite 302, Melbourne, FL 32940. Call 1-800665-9341; Fax 321-821-0450. Website: http://www.preeclampsia.org/forum E-mail: info@preeclampsia.org HEMIFACIAL SPASM

ONLINE | TELEPHONE Hemifacial Spasm Association Online. 805 members. Founded 2001. An international support community of individuals who had or are presently suffering from hemifacial spasm (HFS) and are eager to provide information, understanding and support to other individuals and their families coping with hemifacial spasm. Website: http://www.hfs-assn.org HEMOPHILIA

NATIONAL | INTERNATIONAL | MODEL National Hemophilia Foundation National. 48 chapters. Founded 1948. Dedicated to finding better treatments and a cure for bleeding and clotting disorders. Aim is to prevent the complications of these disorders through education, advocacy and research. Write: National Hemophilia Foundation, 116 W. 32nd St., 11th Floor, New York, NY 10001. Call 1-800-424-2634 (Mon.-Fri., 9am-5pm EST); Fax: 212-328-3777.

Website: http://www.hemophilia.org E-mail: handi@hemophilia.org 125

ONLINE | TELEPHONE Hemophilia & Bleeding Disorders Support Group Online. A place to find Hemophilia support, information and resources via groups ‘LINKS’ section. Open to parents and families of children with bleeding disorders, such as Hemophilia and VWD. Website: http://groups.yahoo.com/neo/groups/bleeding-disorders/info and http://tkcdac.tripod.com/bleeding-disorders/index.html E-mail: bleedingdisorders-owner@yahoogroups.com HEPATITIS

NATIONAL | INTERNATIONAL | MODEL Hepatitis B Foundation International. Founded 1991. Support and information for persons affected by Hepatitis B. Dedicated to finding a cure for Hepatitis B. Funds research, advocacy, information and referrals, educational literature, newsletter, conferences, confidential phone and e-mail support. Referrals to liver specialists.

Suggested donation $40. Write: Hepatitis B Foundation, 3805 Old Easton Rd., Doylestown, PA 18902. Call 215-489-4900 (Mon.-Fri., 8am-5pm); Fax: 215-489-4313.

Website: http://www.hepb.org E-mail: info@hepb.org PKIDs (Parents of Kids with Infectious Diseases) National network. Founded 1996. Provides informational and educational support for parents of children with chronic viral infectious diseases, with an emphasis on Hepatitis B and C. Opportunity for parents, children and teens to share information and experiences. Publications, advocacy and phone support. Online e-mail list, support group and other resources.

Write: PKIDS, P.O. Box 5666, Vancouver, WA 98668. Call 1-877-557-5437 or 360695-0293; Fax: 360-695-6941. Website: http://www.pkids.org E-mail: pkids@pkids.org HEREDITARY HEMORRHAGIC TELANGIECTASIA

NATIONAL | INTERNATIONAL | MODEL HHT Foundation International, Inc. International. Founded 1991. Mutual support and education for persons interested in hereditary hemorrhagic telangiectasia (aka Osler-Weber-Rendu syndrome). Supports scientific, clinical and genetic research.

Counseling and advice for patients. Referrals to appropriate treatment centers. Annual patient/doctor conference. Tri-annual newsletter “Direct Connection.” Aims to protect all members under the Right To Privacy Act. Write: HHT Foundation International, P.O. Box 329, Monkton, MD 21111. Call 410-357-9932; Fax: 410-357-0655. Website: http://www.curehht.org E-mail: info@curehht.org

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HIP REPLACEMENT

ONLINE | TELEPHONE Totally Hip Online. Founded 1997. Support to help relieve the fear of total hip replacement surgery, share experiences and offer morale as well as spiritual support to patients. Helps answer questions on hip replacement. Also discuss other joint problems. Click on “discussions” in the welcome statement for the message board.

Website: http://www.totallyhip.org HISTIOCYTOSIS-X

NATIONAL | INTERNATIONAL | MODEL Histiocytosis Association (BILINGUAL) International network. Founded 1987.

Mutual support and information for parents & patients with this group of rare disorders.

Includes Erdheim-Chester disease, sinus histiocytosis Rosai Dorfman, xanthogranuloma, hemophagocytic lymphohistiocytosis, pulmonary eosinophilic granuloma, Langerhans cell histiocytosis and familial hemophagocytic lymphohistiocytosis. Website offers the opportunity for patients and families to network.

Funds research. Literature and pamphlets (some available in Spanish) and newsletter.

Write: Histiocytosis Association, 332 North Broadway, Pitman, NJ 08071. Call Jeff Toughill, President 856-589-6606; Fax: 856-589-6614. Website: http://www.histio.org E-mail: info@histio.org HEMIPLEGIA

NATIONAL | INTERNATIONAL | MODEL CHASA (Children’s Hemiplegia And Stroke Association) International network.

Founded 1996. Offers support and information to families of children and adults who have hemiplegic cerebral palsy due to stroke or other causes. Support groups, annual family retreat and medical conference, college and athletic scholarships, online resources and “Hemi-Kids” e-mail support group. Contact via website or write: Children’s Hemiplegia and Stroke Association, 4101 W. Green Oaks, Suite 305, PMB 149, Arlington, TX 76016. Website: http://www.chasa.org HERMANSKY-PUDLAK SYNDROME

NATIONAL | INTERNATIONAL | MODEL Hermansky-Pudlak Syndrome Network International network. 2 affiliated groups.

Founded 1992. Mutual support and education for families affected by HermanskyPudlak Syndrome and Chediak Higashi Syndrome. Networks families together for 127

support. Newsletter and annual conference. Supports research. Write: HermanskyPudlak Syndrome Network, c/o Donna Jean Appell, 1 South Rd., Oyster Bay, NY 11771-1905. Call 1-800-789-9477 or 516-922-4022; Fax: 516-624-0640. Website: http://www.hpsnetwork.org E-mail: dappell@hpsnetwork.org HERPES | SEXUALLY TRANSMITTED DISEASES

NATIONAL | INTERNATIONAL | MODEL ASHA’s STI Resource Center National network. 85+ groups. Founded 1914.

Emotional support and education for persons with herpes and other sexually transmitted infections. Referrals to HELP (herpes) support groups, which provide a safe, confidential environment in which to obtain accurate information and share experiences with others. Support group development guidelines. Book ($26.95). Write: ASHA’s STI Resource Center, P.O. Box 13827, Research Triangle Park, NC 27709.

Call 919-361-8400 (ASHA); Fax: 919-361-8425. Website: http://www.ashastd.org and http://www.inspire.com HUMAN PAPILLOMA VIRUS

NATIONAL | INTERNATIONAL | MODEL National Cervical Cancer Coalition International. Founded 1998. 4500+ members.

Provides on-going support system for women, family members and friends facing issues related to cervical cancer, HPV and other HPV cancers. Offers phone pal system matching women together for support, online moderated message board, newsletter, annual conferences, information and referrals. How-to materials on starting a local NCCC chapter available. Write: National Cervical Cancer Coalition, PO Box 13827, Research Triangle Park, NC 27709. Call 800-685-5531; Fax: 919-361-8425.

Website: http://www.nccc-online.org E-mail: nccc@ashastd.org HUNTINGTON’S DISEASE

NATIONAL | INTERNATIONAL | MODEL Huntington’s Disease Society of America National. 54 chapters and affiliates.

Founded 1967. Provides information and referrals to local chapters, support groups, social workers, local health care professionals and other resources. Supports and funds research for treatment and cure of Huntington’s disease. Provides written and audiovisual materials. Publishes three newsletters. Write: Huntington’s Disease Society of America, 505 8th Ave., Suite 902, New York, NY 10018. Call 1-800-3454372 or 1-888-HDSA-506. Website: http://www.hdsa.org E-mail: hdsainfo@hdsa.org HYDROCEPHALUS 128

NATIONAL | INTERNATIONAL | MODEL Hydrocephalus Association (BILINGUAL) National network. Founded 1984.

Provides support, education and advocacy for people with hydrocephalus and their families. Provides funding for hydrocephalus research. Provides a wealth of resource materials on hydrocephalus for all age groups, quarterly newsletter, directory of neurosurgeons, bi-annual national conference and scholarships for young adults.

Support and information available in English and Spanish. Write: Hydrocephalus Association, 4340 East West Highway, Ste 905, Bethesda, MD 20814. Call 1-888-5983789 or 301-202-3811; Fax: 301-202-3813. Website: http://www.hydroassoc.org Email: info@hydroassoc.org National Hydrocephalus Foundation (NHF) International network. Founded 1979.

Mission is to establish and facilitate a communication network among families or adultto-adult, provide informational and educational assistance to individuals and families affected by hydrocephalus and increase public awareness. Promotes and supports research on the cause, prevention and treatment of hydrocephalus. Guidelines to help start support groups available. Help Sheets, brochures, physician referrals and quarterly newsletter. Bi-annual conference, family contact with others in your area or nearby. Write: National Hydrocephalus Foundation, 12413 Centralia Rd., Lakewood, CA 90715-1623. Call 1-888-857-3434 or 562-924-6666. Website: http://nhfonline.org E-mail: debbifields@nhfonline.org HYPERACUSIS | SENSITIVE HEARING

NATIONAL | INTERNATIONAL | MODEL The Hyperacusis Network International network. Founded 1991. Mutual support, education and sharing of information for individuals with hyperacusis, recruitment (hypersensitive hearing), hyperacute hearing, tinnitus, misophonia and phonophobia.

Resources for family members as well. Promotes research into cause and cure.

Message board, pen pals network, hearing protection products, information and worldwide clinician referrals. Write: The Hyperacusis Network, 4417 Anapaula Lane, Green Bay, WI 54311. Call 920-866-3377. Message Board: http://www.chathyperacusis.net Website: http://www.hyperacusis.net E-mail: earhelp@yahoo.com HYPOPARATHYROIDISM

NATIONAL | INTERNATIONAL | MODEL Hypoparathyroidism Association, Inc. International network. 4,500+ members from 70 countries. Founded 1994. Maintains a worldwide network of support, promotes public, as well as professional, awareness of this disorder through education via their 129

website, quarterly newsletter, periodic conferences and webinars; and fundraises to support research. Website includes a member gallery and support forum. Write: Hypoparathyroidism Association Inc., c/o James E. Sanders, P.O. 2258, Idaho Falls, ID 83403. Call 208-524-3857. Website: https://www.hypopara.org E-mail: jsanders@hypopara.org HYPOSPADIAS | EPISPADIAS

NATIONAL | INTERNATIONAL | MODEL Hypospadias and Epispadias Association (HEA) National. Provides support for males with, families of and for professionals interested in the many physical and emotional issues stemming from these congenital conditions. Provides conferences, online message board and chat room. Write: HEA, 235 West 102 nd St., #E-5, NY, NY 10025. Call 917-861-8339. Website: http://www.heainfo.org

Hypospadias Support Group International. Provides support and education for parents, boys and men with hypospadias. Information about causes and treatment. Email for information. Website: http://www.hypospadiasuk.co.uk E-mail: info@hypospadiasuk.co.uk HYPOTHYROID

ONLINE | TELEPHONE Hypothyroid Disorder Support Group Online. Provides support for people suffering from hypothyroid disorder. A place to share experiences, coping strategies, alternative treatments and causes of a hypothyroid. Website: http://groups.yahoo.com/neo/groups/hypothyroid/info E-mail: hypothyroidowner@yahoogroups.com ICHTHYOSIS

NATIONAL | INTERNATIONAL | MODEL FIRST (Foundation for Ichthyosis and Related Skin Types) National network.

Founded 1981. Provides support for people with ichthyosis through networking with others. Public and professional education. Supports research on treatment and cure.

Advocacy issues, quarterly newsletter, publications and bi-annual conference.

Recommended donation $40 (US) $40 (International). Write: FIRST, 2616 North Broad St., Colmar, PA 18915. Call 1-800-545-3286 or 215-997-9400; Fax: 215-997-9403.

Website: http://www.firstskinfoundation.org E-mail: info@firstskinfoundation.org 130

IDIOPATHIC THROMBOCYTOPENIC PURPURA

NATIONAL | INTERNATIONAL | MODEL Platelet Disorder Support Association (BILINGUAL) National. Founded 1998. 36 affiliated groups. Provides information and support to persons who have ITP (immune thrombocytopenia) and related platelet disorders. Members regularly exchange messages. Support group meetings, conferences, advocacy, newsletter and written material. Online and printed information and support on ITP and pregnancy, children with ITP and adults with ITP. Spanish and French language books available. Write: Platelet Disorder Support Association, 8751 Brecksville Rd., Suite 150, Cleveland, OH 44141. Call 1-877-528-3538. Website: http://www.pdsa.org E-mail: pdsa@pdsa.org INCONTINENCE | NOCTURNAL ENYRESIS | DIURNAL

NATIONAL | INTERNATIONAL | MODEL Continence Restored, Inc. International. 8 affiliated groups. Founded 1984. Forum where persons with incontinence, their families and friends can express concerns and receive assistance. Disseminates information on bladder control. Phone support.

Assistance in starting groups. Write: Continence Restored, Inc., 407 Strawberry Hill Ave., Stamford, CT 06902. Call 203-348-0601. E-mail: as4young@optonline.net National Association For Continence (NAFC) (BILINGUAL) National. Dedicated to improving the quality of life of people with incontinence by providing support and information about the causes, prevention, diagnosis, treatments and management alternatives for incontinence. Offers telephone support network, moderated message board and listserv. Newsletter, literature (some available in Spanish), regional conferences, information and referrals. Write: NAFC, P.O. Box 1019, Charleston, SC 29402. Call 1-800-252-3337; Fax: 843-377-0905. Website: http://www.nafc.org Email: memberservices@nafc.org Simon Foundation for Continence National. Founded 1983. Support and advocacy for people suffering from incontinence. Newsletter, books, video, fact sheets, educational program called, “I Will Manage�. and international conference series entitled Innovating for Continence. Write: Simon Foundation for Continence, P.O. Box 815, Wilmette, IL 60091. Call 1-800-237-4666; Fax: 847-864-9758. Website: http://www.simonfoundation.org E-mail: cbgartley@simonfoundation.org or info@simonfoundation.org INCONTINENTIA PIGMENTI

NATIONAL | INTERNATIONAL | MODEL 131

Incontinentia Pigmenti International Foundation International network. Founded 1995. Dedicated to family support, research and physician awareness on incontinentia pigmenti. Maintains international database of patients. Write: Incontinentia Pigmenti International Foundation, 30 East 72nd St., 16th Floor, New York, NY 10021. Call 212452-1231; Fax: 212-452-1406. Website: http://www.ipif.org E-mail: ipif@ipif.org INFERTILITY | CHILDLESSNESS

NATIONAL | INTERNATIONAL | MODEL NINE (National Infertility Network Exchange) National. Founded 1988. Support for persons and couples with impaired fertility and the professionals who serve them.

Support system to help understand, cope and reach a resolution. Monthly educational meetings, newsletter, talk line and professional referral. Guidelines to assist others start a similar group. Dues $40/yr. Write: NINE, P.O. Box 204, East Meadow, NY 11554. Call 516-794-5772; Fax: 516-794-0008. Website: http://www.nineinfertility.org E-mail: nineinfertility9@aol.com RESOLVE, The National Infertility Association National. 50+ chapters. Founded 1974. Provides emotional support and medical referrals for infertile couples. Support groups, education for members and public. Quarterly magazine and publications.

Chapter development guidelines. Write: RESOLVE, Inc., 7918 Jones Branch Dr., McLean, VA 22102. Call 703-556-7172; Fax: 703-506-3266. Website: http://www.resolve.org E-mail: info@resolve.org

ONLINE | TELEPHONE Fertile Thoughts Online. Provides support for anyone affected by infertility. Offers large variety of topics including: general infertility, secondary infertility, over 35, grief, polycystic ovarian syndrome, adoption, and many more. Website: http://www.fertilethoughts.net INFLAMMATORY BOWEL DISEASE | IRRITABLE BOWEL SYNDROME

NATIONAL | INTERNATIONAL | MODEL Crohn’s and Colitis Foundation of America (CCFA) National. Founded 1967.

Support groups and educational programs for people with Crohn’s disease or ulcerative colitis, as well as their family and friends. Membership benefits include: newsletter, a national magazine and “I Can’t Wait” restroom access card. Membership starts at $30/yr. Write: CCFA, 733 Third Ave., New York, New York 10016. Call 1-888694-8872. (Mon.-Fri., 9am-5pm EST).Website: http://www.ccfa.org (to find support groups click on “find a support group”) E-mail: info@ccfa.org 132

Irritable Bowel Syndrome Self Help and Support Group International. Groups in USA and Canada. Founded in 1987. Mutual support for persons with irritable bowel syndrome and digestive health disorders, their families and health care professionals.

Literature, advocacy and assistance in starting similar groups. Write: IBS Self Help and Support Group, 24 Dixwell Ave., #118, New Haven, CT 06511. Website: http://www.ibsgroup.org E-mail: ibs@ibsgroup.org

ONLINE | TELEPHONE Crohn’s Forum Online. Mutual support and information for persons with Crohn’s disease and related conditions, and their families. Groups include: Crohn’s colitis, uninsured persons, young adults, parents, gay/lesbian, irritable bowel, and treatmentspecific, among others. Website: http://www.crohnsforum.com INTERSTITIAL CYSTITIS

NATIONAL | INTERNATIONAL | MODEL Interstitial Cystitis Association National. Founded 1984. Provides education, information and support for persons with interstitial cystitis, their spouses and families.

Quarterly newsletter. Dues $45/yr. Write: Interstitial Cystitis Association, 7918 Jones Branch Dr., Suite 300, McLean VA 22102. Call 1-800-435-7422 or 703-442-2070 (Mon.-Fri., 8am-5pm EST); Fax: 703-506-3266. Website: http://www.ichelp.org Email: icamail@ichelp.org INTESTINAL MULTIPLE POLYPOSIS

NATIONAL | INTERNATIONAL | MODEL Intestinal Multiple Polyposis and Colorectal Cancer (IMPACC) National network.

Founded 1986. Support network to help patients and families dealing with familial polyposis and hereditary colon cancer. Information and referrals, encourages research, educates professionals and public. Phone support network, correspondence and literature. Write: IMPACC, c/o Ann Fagan, P.O. Box 11, Conyngham, PA 18219. Call Ann Fagan 570-788-1818 (day) or 570-788-3712 (eve.); Fax: 570-788-4046. E-mail: pjfagan@epix.net IRON DISORDERS

ONLINE | TELEPHONE Iron Disorders Online Discussion Group Online. Provides a modestly censored yet open venue through which patients can share experiences with other patients, sometimes healthcare professionals participate. Website: http://www.irondisorders.org/online-discussion-group E-mail: sclary@irondisorders.org 133

KABUKI SYNDROME

NATIONAL | INTERNATIONAL | MODEL Kabuki Syndrome Network (BILINGUAL) International network. Founded 1997.

Provides mutual support and information for families affected by Kabuki syndrome (aka Niikawakuroki syndrome). Coordinates family directory. Literature, phone support, pen pals, moderated listserv and newsletter. Brochure in English and Spanish available.

Write: Kabuki Syndrome Network, c/o Dean and Margot Schmiedge, 8060 Struthers Cr., Regina, Saskatchewan, Canada S4Y 1J3. Call Margot and Dean Schmiedge 306543-8715. Website: http://www.kabukisyndrome.com E-mail: margot@kabukisyndrome.com KALLMANN SYNDROME (HYPOGONADOTROPHIC HYPOGONADISM)

ONLINE | TELEPHONE Bodies Like Ours | Intersex Information and Peer Support Online. 1000+ members. Primarily provides support via forums. Group seeks to end the shame and secrecy that surrounds people born intersexed and/or with atypical genitals through community and peer support. Separate messages-boards for CAH (congenital adrenal hyperplasia). AIS (Androgen Insensitivity Syndrome), MRKH (Meyer-RokitanskyKuester-Hauser syndrome), Klinefelters syndrome, chromosomal anomalies and more.

Website: http://www.bodieslikeours.org/forums KAWASAKI DISEASE

NATIONAL | INTERNATIONAL | MODEL Vasculitis Foundation International. 30+ groups. Founded in 1995. Provides support for a variety of vascular disorders including Behcet’s disease, Buerger’s disease, Cryogiobullnemia, Henock-Schonlein Purpura, Kawasaki disease, Wegener’s disease and other vascular anomalies. Publishes newsletter, literature, provides advocacy.

Write: Vasculitis Foundation, PO Box 28660, Kansas City, MO 64188. Call 1-800-2279474 or 816-436-8211. Website: http://www.vasculitisfoundation.org/support

ONLINE | TELEPHONE Kawasaki Disease Foundation Online. National partnership of parents, patients and professionals dedicated to advancing Kawasaki issues. Family matching for support.

Symposiums. Online discussion forum. Website: http://www.kdforum.org KENNEDY’S DISEASE

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NATIONAL | INTERNATIONAL | MODEL Kennedy’s Disease Association, Inc. International network. Founded 2000. Mutual support and information for persons with Kennedy’s disease (aka spinal and bulbar muscular atrophy), their families, caregivers and researchers. Opportunity to share personal experiences to help alleviate the feeling of aloneness and to provide hope.

Provides information regarding diagnosis, treatment and current research. Online chatroom and Forum. Write: Kennedy’s Disease Association, Inc., P.O. Box 1105, Coarsegold, CA 93614-1105. Call 559-658-5950. Website: http://www.kennedysdisease.org E-mail: info@kennedysdisease.org KIDNEY DISEASE

NATIONAL | INTERNATIONAL | MODEL American Association of Kidney Patients National. 82 groups. Founded 1969.

Provides information, education and mutual support for kidney patients, their families and friends. Has 82 local community support groups. Membership includes those with reduced kidney function, as well as dialysis and transplant patients. Also provides educational materials, bi-monthly magazine, three electronic newsletters, and an annual patient meeting. If you need to start a new local support group, contact them and ask for their “Support Group Guidebook” for developing an independent patient support group. Write: American Association of Kidney Patients, 2701 North Rocky Point Drive, Suite 150, Tampa, FL 33607. Call 1-800-749-2257 or 813-636-8100 (Mon.-Fri., 8:30am-4:30pm EST); Fax: 813-636-8122. Website: http://www.aakp.org PKD Foundation International. 55 volunteer Friends chapters. Founded 1982. Funds research and provides emotional support and education for people with polycystic kidney disease and their families. Promotes public awareness. Holds medical seminars and fund-raisers. Newsletters and online educational tools. Write: PKD Foundation, 8330 Ward Parkway, Suite 510, Kansas City, MO 64114. Call 1-800-753-2873 or 816931-2600; Fax: 816-931-8655. Website: http://www.pkdcure.org E-mail: angelac@pkdcure.org KLINEFELTER SYNDROME

NATIONAL | INTERNATIONAL | MODEL Klinefelter Syndrome and Associates National network. Founded 1990. Provide support, educate, encourage research and foster treatment and cures for symptoms of X and Y chromosome variations. These include, but are not limited to: XXY, XXX, XYY, XXXY, XXXXXY and XXYY. Brochures are available that describe basic symptoms, diagnoses and treatments. Membership $25 (US); $35 Family; $10 Adult 135

with Condition. Members have unlimited access to an enormous online library of past conferences videos, webinars and online forums. Members receive a discount on conference registration. Write: Klinefelter Syndrome and Associates, P.O. Box 872, Pine, CO 80470-0872. Call 1-888-999-9428; Fax: 303-400-3454 Website: http://www.genetic.org E-mail: info@genetic.org

ONLINE | TELEPHONE Bodies Like Ours | Intersex Information and Peer Support Online. 1000+ members. Primarily provides support via forums. Group seeks to end the shame and secrecy that surrounds people born intersexed and/or with atypical genitals through community and peer support. Separate messages-boards for CAH (congenital adrenal hyperplasia). AIS (Androgen Insensitivity Syndrome), MRKH (Meyer-RokitanskyKuester-Hauser syndrome), Klinefelters syndrome, chromosomal anomalies and more.

Website: http://www.bodieslikeours.org/forums XXYTalk.com: Int’l Support Forums for Klinefelter Syndrome Online. Offers support by providing the means for individuals with Klinefelter Syndrome, XXY and variants to interact with one another. Website: http://www.xxytalk.com LARYNGECTOMY

NATIONAL | INTERNATIONAL | MODEL International Association of Laryngectomees International. 200 chapters.

Founded 1952. Acts as a bridge starting before laryngectomy surgery through rehabilitation. Provides practical and emotional support. Newsletter, conferences.

Chapter development guidelines. Write: IAL, 925B Peachtree St., NE, Suite 316, Atlanta, GA 30309. Call 1-866-425-3678. Website: http://www.theial.com E-mail: ialed@theial.com WebWhispers, Inc. Online. 3,000 members. Founded 1996. Provides support for individuals who have questions about larynx cancer treatments, surgery, recovery, and what to expect after surgery. Membership is open to individual laryngectomees, caregivers, medical professionals, survivors of larynx and other throat cancers.

Member-run mutual-aid to support people in rehabilitation. Group has a moderated email list where members share knowledge and experience. Write: WebWhispers, Inc., PO Box 453, Gold Hill, OR 97525. Website: http://www.webwhispers.org E-mail webmaster@webwhispers.org LEAD POISONING

NATIONAL | INTERNATIONAL | MODEL 136

United Parents Against Lead National. 7 chapters and affiliates. Founded 1996.

Organization which supports parents of lead poisoned children and who work to end the continuing threat of lead poisoning through education, advocacy, resource referral and legislative action. UPAL is accredited by the EPA to train and certify painters and contractors in RRO and LDST. Membership $10 (individual), $35 (family) and $100 (organization). Write: United Parents Against Lead, P.O. Box 24773, Richmond, VA 23224. Call 804-308-1518; Fax: 804-562-5031. Website: http://www.upal.org E-mail: upal@juno.com LENNOX-GASTAUT SYNDROME

NATIONAL | INTERNATIONAL | MODEL LGS Foundation National. Support and information for parents of children with Lennox-Gastaut Syndrome (childhood epileptic encephalopathy), a rare and debilitating form of epilepsy. Call 718-374-3800. Write: LGS Foundation, 192 Lexington Ave., Ste. 216, New York, NY 10016. Website: http://www.lgsfoundation.org E-mail: info@lgsfoundation.org LEUKODYSTROPHY

NATIONAL | INTERNATIONAL | MODEL United Leukodystrophy Foundation, Inc. National network. Founded 1982.

Provides information and resources for leukodystrophy patients and their families.

Communication network among families. Promotes research, public and professional awareness. National conference and quarterly newsletter. Dues $35/family; $70/professional. Write: United Leukodystrophy Foundation, 224 N. 2nd St., Ste 2, DeKalb, IL 60115. Call 1-800-728-5483 or 815-748-3211; Fax: 815-748-0844.

Website: http://www.ulf.org E-mail: office@ulf.org We C.A.R.E. (Compassion for families, increasing Awareness, influencing & fundraising Research and promoting Education) International. 350+ members.

Support for families in the US and internationally. Family discussion list, annual family conference in the US, family gatherings domestically and internationally, diagnostic testing & research updates on website, clinical trial design & recruiting assistance, a compassion fund for resource & financial support. Active with researchers and clinicians to optimize quality of life for loved one(s). Active in policy, newborn screening, NIH, FDA and supporting those with MLD angels. Call: 503-656-4808.

Write: MLD Foundation, 21345 Miles Drive, West Linn, OR 97068-2878. Website: http://mldfoundation.org E-mail: info@mldfoundation.org

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LIFE THREATENING | CHRONIC | TERMINAL ILLNESS

NATIONAL | INTERNATIONAL | MODEL Project DOCC - Delivery Of Chronic Care International. 28 chapters. Founded 1994. Provides education regarding the impact of chronic illness and/or disability on a family. Information, referrals, phone support, e-mail correspondence and “how to” guides on developing a local group. Write: Project DOCC, 18 Dunster Rd., Great Neck, NY 11021. Website: http://projectdocc.org E-mail: projectdocc.national@gmail.com Rest Ministries National. Evangelical-based. 300 affiliated groups. Founded 1997.

Support for people who live with chronic pain or illness and their families. Online social network “The Sunroom,” encouragement and resources for starting groups. Write: Rest Ministries, Inc., P.O. Box 502928, San Diego, CA 92150. Call 858-486-4685. Website: http://restministries.com E-mail: rest@restministries.org

ONLINE | TELEPHONE Grief Healing Discussion Groups Online. Various interactive support forums for persons grieving the loss of a loved one. Groups include: anticipatory loss, loss of child/grandchild, loss of partner, and many more. Website: http://www.griefhealingdiscussiongroups.com LITTLE PEOPLE

NATIONAL | INTERNATIONAL | MODEL Adult Growth Hormone Deficiency National network. Founded 1989. Provides public education and networking for adults with growth-related disorders. Information and referrals, phone support, pen pals, annual convention and conferences.

Newsletter. Write: Adult Growth Hormone Deficiency, c/o The MAGIC Foundation, 6645 W. North Ave., Oak Park, IL 60302. Call 1-800-362-4423; Fax: 708-383-0899.

Website: http://www.magicfoundation.org E-mail: mary@magicfoundation.org Growth Hormone Deficiency Support Network National network of MAGIC. Founded 1989. Network and exchange of information for families of children with growth hormone deficiency disorders. Information and referrals, phone support, pen pals, conferences, literature, annual convention and membership newsletter $35 (US); $40 (Canada); $45 (overseas). Write: Growth Hormone Deficiency Support Network, c/o MAGIC Foundation, 6645 W. North Ave., Oak Park, IL 60302. Call 1-800-362-4423 or 708-383-0808 (Mon.-Fri., 9am-4pm CST); Fax: 708-383-0899. Website:

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http://www.magicfoundation.org E-mail: contactus@magicfoundation.org

Human Growth Foundation National. 31 chapters. Founded 1965. Local groups provide members the opportunity to meet other parents of children with growth-related disorders. Mutual sharing of problems, research and public education. Monthly and quarterly newsletter. Parent-to-parent support and networking program. Annual conference. Also offers internet support list for parents and adults. Write: Human Growth Foundation, 997 Glen Cove Ave., Glen Head, NY 11545-1564. Call 1-800-4516434; Fax: 516-671-4055. Website: http://www.hgfound.org E-mail: hgf1@hgfound.org Little People of America (BILINGUAL) National. 73 chapters. Founded 1957.

Provides mutual support to people of short stature (4 ft. 10 inches and under) and their families. Information on physical and developmental concerns, employment, education, disability rights, medical issues, adaptive devices, etc. Newsletter. Provides educational scholarships and medical assistance grants, access to medical advisory board and assistance in adoption. Local, regional and national conferences and athletic events. Online chatroom and e-mail listserv. Dues $55/yr.; 20/yr. (seniors); $750 (lifetime). Write: Little People of America, 250 El Camino Real, Suite 211, Tustin, CA 92780. Call 1-888-572-2001. Website: http://www.lpaonline.org E-mail: info@lpaonline.org MAGIC Foundation for Children’s Growth National network. Founded 1989.

Provides public education and networking for families of children with growth-related disorders. MAGIC Foundation has 11 divisions including: growth hormone deficiency, congenital adrenal hyperplasia, Turner’s syndrome, precocious puberty, McCune Albright syndrome, panhypopituitarism, adult growth hormone deficiency, Russell Silver Syndrome, thyroid disorders, chronic renal insufficiencies and septo optic dysplasia. Information & referrals, phone support, pen pals, annual convention and conferences. Newsletters for children and adults. Write: The MAGIC Foundation, 6645 W. North Ave., Oak Park, IL 60302. Call 1-800-362-4423 (Mon.-Fri., 9am-4pm CST); Fax: 708-383-0899. Website: http://www.magicfoundation.org E-mail: mary@magicfoundation.org LIVER DISEASE

NATIONAL | INTERNATIONAL | MODEL American Liver Foundation National. 14 divisions. Founded 1976. Dedicated to the prevention, treatment and cure of liver disease (including hepatitis) through research, education and advocacy. Members include patients, families, professionals and supporters. Chapters organized and operated by lay volunteers and staff. Online local 139

division locator. Write: American Liver Foundation, 39 Broadway, Suite 2700, New York, NY 10006. Call 212-943-1059. Website: http://www.liverfoundation.org Children’s Liver Association for Support Services (CLASS) Model. Founded 1995. Dedicated to addressing the emotional, educational and financial needs of families with children with liver disease or liver transplantation. Telephone hotline, newsletter, parent matching, literature and financial assistance. Supports research and educates public about organ donations. Write: Children’s Liver Association for Support Services, 25379 Wayne Mills Pl., Suite 143, Valencia, CA 91355. Call 1-877-679-8256 or 661-263-9099; Fax: 661-263-9099. Website: http://www.classkids.org

ONLINE | TELEPHONE PSC-Support Online. 2000+ members. Founded 1998. Support for patients or family members of patients with primary sclerosing cholangitis, a chronic cholestatic liver disease characterized by periductal inflammation of both intrahepatic and extrahepatic bile ducts. Website: https://groups.yahoo.com/neo/groups/psc-support/info Email: psc-support-owner@yahoogroups.com LOIN PAIN HEMATURIA SYNDROME

NATIONAL | INTERNATIONAL | MODEL Hearts and Hands Model. 1 group in NC. Founded 1993. Emotional, spiritual and educational support for persons with either rare or undiagnosed illnesses and their families. Special interest in loin pain hematuria syndrome. Write: Hearts and Hands, c/o Winoka Plummer, 1648 Oliver’s Crossing Circle, Winston-Salem, NC 27127. Call 336-785-7612.

LOWE SYNDROME

NATIONAL | INTERNATIONAL | MODEL Lowe Syndrome Association International. Founded 1983. Purpose is to foster communication among families, promote a better understanding of the syndrome, provide medical & educational information, sponsor biennial International conferences, encouragement, financial support, clinical and medical research. Parents, family, friends, professionals and others who are interested in Lowe syndrome are welcome.

Dues $25 annually (can be waived if parents are in need). Write: Lowe Syndrome Association, PO Box 864346, Plano, TX 75086-4346. Call 972-733-1338. Website: http://www.lowesyndrome.org E-mail: info@lowesyndrome.org LUPUS

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Juvenile Arthritis Alliance National. 10 regions. Founded 1981. Council of the Arthritis Foundation devoted to serving the special needs of children, teens and young adults with childhood rheumatic diseases (including juvenile rheumatoid arthritis, systemic lupus erythematosus and ankylosing spondylitis) and their families. Provides information, advocacy, educational materials, programs and conferences. Offers online support and local chapter locator. Membership $20/yr. Write: Juvenile Arthritis Alliance, 1330 West Peachtree St., Suite 100, Atlanta, GA 30309. Call 404-872-7100 ext. 7538. Website: http://www.kidsgetarthritistoo.org The Lupus Foundation of America, Inc. (BILINGUAL) National. 40 chapters.

Founded 1977. Provides information and materials about lupus, and services to people with lupus and their families. Conducts education and supports research programs.

Raises money for research. Holds national fundraising walks. Membership and national magazine “Lupus Now� available by subscription and through local chapters.

Write: Lupus Foundation of America, Inc., 2000 L St. NW, Suite 410, Washington, DC 20036. Call 1-800-558-0121; Fax: 202-349-1156. Website: http://www.lupus.org Email: info@lupus.org LYME DISEASE

NATIONAL | INTERNATIONAL | MODEL National Capital Lyme Disease Association National. 16 groups (groups in VA, MD, PA and CT) Support and education for individuals with Lyme disease. Write: NatCapLyme Association, PO Box 8211, McLean, VA 22106-8211. Call 703-821-8833.

Website: http://www.natcaplyme.org LymeDisease.org Formerly called CALDA - California Lyme Disease Association.

National. 25 groups. Provides information, resources and support groups. Currently they list all 25 California support groups and they are encouraging the development of online Yahoo groups in other states to both support individuals and list their local support groups as well as a group for group leaders. Publishes a journal and developed a nationwide network of grassroots activists and support groups to provide voice to patients through a state-based online community. Assists groups nationwide and worldwide to strengthen their ability to speak out about political, scientific, legal and healthcare issues. Write: LymeDisease.org, PO Box 1352, Chico, CA 95927.

Website: http://www.lymedisease.org/california/california_support_groups.html E-mail: contact@lymedisease.org LYMPHANGIOLEIOMYOMATOSIS (LAM)

NATIONAL | INTERNATIONAL | MODEL

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The LAM Foundation International network. Founded 1995. Provides support and education for patients, families and professionals dealing with LAM (lymphangioleiomyomatosis), a rare lung disorder affecting only women causing smooth muscle cells to grow throughout the lungs. Newsletter, fund-raising, advocacy.

Offers e-mail listserv, patient networks, and private Facebook group. Write: The LAM Fdn., 4015 Executive Park, Suite 320, Cincinnati, OH 45241. Call 1-877-287-3526 or 513-777-6889. Website: http://www.thelamfoundation.org E-mail: info@thelamfoundation.org LYMPHEDEMA

NATIONAL | INTERNATIONAL | MODEL National Lymphedema Network Inc. National. Founded 1988. Support groups and information regarding primary and secondary lymphedema for patients and professionals. Newsletter, telephone infoline, conferences, pen pal program, referrals to treatment centers and physicians. Assistance in starting new groups. Dues $50.

Write: National Lymphedema Network, 225 Bush St., Suite 357, San Francisco, CA 94104. Call 1-800-541-3259 (toll-free hotline) or 415-908-3681; Fax: 415-908-3812.

Website: http://www.lymphnet.org E-mail: nln@lymphnet.org LYSOSOMAL ACID LIPASE DEFICIENCY

NATIONAL | INTERNATIONAL | MODEL LAL SOLACE (Support Organization for Lysosomal Acid Lipase Deficiency Advocacy, Care and Expertise) Online. Created to bring LAL Deficiency patients and families together to share experiences, knowledge and compassion. Group welcomes both early onset Wolman’s Disease and late onset Cholesteryl Ester Storage Disease patients and families. Website: http://www.lalsolace.org E-mail: lalsolace@gmail.com MACROCEPHALY-CAPILLARY MALFORMATION

NATIONAL | INTERNATIONAL | MODEL M-CM Network, The National. Works to improve the lives of families affected by Macrocephaly-capillary malformation (M-CM), a rare genetic syndrome, through information and by connecting families affected by M-CM. Write: M-CM Network, PO Box 97, Chatham, NY 12037. Website: http://www.m-cm.net MARFAN SYNDROME

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NATIONAL | INTERNATIONAL | MODEL The Marfan Foundation National network. Founded 1981. Network includes chapters, support groups and volunteer telephone support contacts. Provides information on Marfan syndrome and related connective tissue disorders to patients, families, medical professionals and the public. Provides a means for patients and relatives to share experiences and support one another. Supports and fosters research. Conference, newsletter and publications. Write: National Marfan Foundation, 22 Manhasset Ave., Port Washington, NY 11050. Calltel:1-800-862-7326 or 516-8838712; Fax: 516-883-8040. Website: http://www.marfan.org E-mail: support@marfan.org MASTOCYTOSIS

NATIONAL | INTERNATIONAL | MODEL The Mastocytosis Society, Inc. International network. Founded 1994. Support through newsletters, website, support group meetings and annual conferences for persons with mastocytosis (a proliferation of mast cells) and mast cell activation syndromes, their families, friends, physicians and healthcare professionals working with them. E-mail discussion group for patients and researchers at online tmssupport@yahoogroups.com and Facebook page. Fundraising for research and phone support. Write: TMS, P.O. Box 129, Hastings, NE 68902-0129. Website: http://www.tmsforacure.org E-mail info@tmsforacure.org McCUNE-ALBRIGHT SYNDROME | FIBROUS SYSPLASIA

NATIONAL | INTERNATIONAL | MODEL McCune-Albright Syndrome/Fibrous Dysplasia Division International network.

Founded 1990. Provides support for families of McCune-Albright syndrome patients.

Newsletters, updated medical information, phone support and annual conventions.

Dues $35/yr. Write: McCune-Albright Syndrome/Fibrous Dysplasia Division, c/o MAGIC Foundation, 6645 West North Ave., Oak Park, IL 60302. Call 1-800-362-4423; Fax: 708-383-0899. Website: http://www.magicfoundation.org E-mail: contactus@magicfoundation.org MENINGIOMA (BRAIN TUMOR)

ONLINE | TELEPHONE Meningioma Mommas Online. Founded 2003. Forum offers hope, information and friendship to those newly diagnosed, as well as long term survivors, of meningioma brain tumors. Website: http://www.meningiomamommas.org

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MENOPAUSE

NATIONAL | INTERNATIONAL | MODEL International Premature Ovarian Failure Association, Inc. International network.

25 groups. Founded 1995. Peer-to-peer support for women who have premature ovarian failure, premature/primary ovarian insufficiency, and premature menopause.

Phone support, literature, information and referrals and local support groups. Write: IPOFA, P.O. Box 23643, Alexandria, VA 22304. Call 703-913-4787. Website: http://www.ipofa.org

ONLINE | TELEPHONE Power Surge Online. Provides support and information for women going through menopause. Online interactive chats and message boards. Website: http://powersurge.invisionzone.com METABOLIC DISORDERS

NATIONAL | INTERNATIONAL | MODEL CDG Care International network. Founded 1996. Support for parents of children diagnosed with congenital disorders of glycosylation, an inherited metabolic disease affecting all body parts, especially the central and peripheral nervous systems. Support is attained primarily online. Group also provides bi-annual newsletter, phone support, advocacy, information and referrals. Bulletin board for families to interact with questions, comments and updates. Write: CDG Care, c/o Andrea Beraducci, President, P.O. Box 3784, Pueblo, CO 81005. Call 1-866-295-7910. Website: http://www.cdgcare.com E-mail: info@cdgcare.como CLIMB - National Info. Centre for Inherited Metabolic Disease International network. Founded 1981. Provides support and information for individuals and their families dealing with over 700 metabolic conditions. Newsletter, phone support, internet forums, 600 family contacts, annual conference and some written information in English, Welsh, Urdu and Punjabi. Small administration fee required for postage.

Write: Climb Building, 176 Nantwich Rd., Crewe, CW2 6BG UK. Call 0044 845 241 2173 (day). Website: http://www.climb.org.uk E-mail: pam@climb.org.uk MEYER-RIKITANSKY-KUESTER-HAUSER SYNDROME

ONLINE | TELEPHONE Bodies Like Ours | Intersex Information and Peer Support Online. 1000+ members. Primarily provides support via forums. Group seeks to end the shame and secrecy that surrounds people born intersexed and/or with atypical genitals through 144

community and peer support. Separate messages-boards for CAH (congenital adrenal hyperplasia). AIS (Androgen Insensitivity Syndrome), MRKH (Meyer-RokitanskyKuester-Hauser syndrome), Klinefelters syndrome, chromosomal anomalies and more.

Website: http://www.bodieslikeours.org/forums MILLER’S SYNDROME

NATIONAL | INTERNATIONAL | MODEL Foundation for Nager and Miller Syndromes International. Founded 1989.

Networking for families that are affected by Nager or Miller syndromes. Provides referrals, library of information, phone support, newsletter, brochures and scholarships for Camp About Face. Write: Foundation for Nager and Miller Syndromes, c/o De De Van Quill, 13210 South East 342nd St., Auburn, WA 98092. Call 1-800-507-3667 or 253-333-1483; Fax: 253-288-7679. Website: http://www.fnms.net E-mail: ddfnms@aol.com MITOCHONDRIAL DISORDERS

NATIONAL | INTERNATIONAL | MODEL United Mitochondrial Disease Foundation (UMDF) National network. 13 chapters.

24 affiliated groups. Founded 1995. Provides support and networking to persons with mitochondrial disease, a genetic degenerative disease, and their families. Promotes research and education for the diagnosis, treatment and cure. Local support groups, quarterly newsletter, information and referrals, library of medical publications, patient registry, phone help and annual symposium. Awards research grants. Help with starting local support groups. Online support available - contact connect@umdf.org for information. Write: UMDF, 8085 Saltsburg Rd., Suite 201, Pittsburgh, PA 15239.

Call 412-793-8077; Fax: 412-793-6477. Website: http://www.umdf.org E-mail: info@umdf.org MŒBIUS SYNDROME

NATIONAL | INTERNATIONAL | MODEL Mœbius Syndrome Foundation International network. Founded 1994.

Communication and support network for persons with Moebius syndrome, (a paralysis of the 6th and 7th cranial nerves) and their families. Information, education and fundraising for research. Newsletter, phone support, informal meetings and national conference. Help with starting groups. Write: Moebius Syndrome Fdn., P.O. Box 147, Pilot Grove, MO 65276. Call Vicki McCarrell 660-834-3406 (eve.) or 573-751-8293 (day); Website: http://www.moebiussyndrome.com E-mail: vickimc@iland.net

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MOTILITY DISORDERS

NATIONAL | INTERNATIONAL | MODEL Association of Gastrointestinal Motility Disorders, Inc. International network.

Founded 1991. Support and education for persons affected by digestive motility disorders. Serves as educational resource and information base for medical professionals. Physician referrals, video tapes, large variety of educational materials, networking support, symposiums and several publications. General membership dues $35 (US); $42 (International). Dues can be waived. Write: AGMD International Corp.

Headquarters, 12 Roberts Dr., Bedford, MA 01730. Call 781-275-1300; Fax: 781-2751304. Website: http://www.agmd-gimotility.org E-mail: digestive.motility@gmail.com MOYA-MOYA DISEASE

ONLINE | TELEPHONE MoyaMoya Disease Internet Support Online. Provides support for family members and individuals with MoyaMoya disease. Write: MoyaMoya.com, PO Box 9602, Wichita, KS 67277. Call 316-516-4525 (DJ). Website: http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl MUCOPOLYSACCHARIDOSES | MORQUIO’S SYNDROME

NATIONAL | INTERNATIONAL | MODEL National MPS Society National. Founded 1974. Provides support and hope for individuals with mucopolysaccharidoses or mucolipidoses and their families through research, advocacy, public education and parent referral service for support networking. Write: National MPS Society, P.O. Box 14686, Durham, NC 27709. Call 919-806-0101 or 1-877-677-1001. Website: http://www.mpssociety.org E-mail: info@mpssociety.org MULLERIAN ANOMALIES

ONLINE | TELEPHONE Mullerian Anomalies of the Uterus Online. Support, information and education for persons with Mullerian anomalies of the uterus such as bicornuate, septate, unicornuate, hypoplastic and didelphys uteria. Message board. Website: http://groups.yahoo.com/neo/groups/mulleriananomalies/info MULTIPLE ENDOCRINE NEOPLASIA DISORDERS 146

NATIONAL | INTERNATIONAL | MODEL AMEND Association for Multiple Endocrine Neoplasia Disorders International.

Founded 2002. Provides information and support services to families around the world affected by multiple endocrine neoplasia and associated endocrine tumors and syndromes. Write: AMEND, The Warehouse, Draper St., Tunbridge Wells, Kent, UK TN4 0PG. Website: http://www.amend.org.uk (for support groups) http://www.amend.org.uk/get-involved/start-a-patient-group.html E-mail: (Jo Grey) jo.grey@amend.org.uk MULTIPLE HEREDITARY EXOSTOSES

NATIONAL | INTERNATIONAL | MODEL The MHE Coalition National. 3 affiliated groups. Founded 2000. Support and information for persons and their families affected by multiple hereditary exostoses, a skeletal disorder characterized by the formation of abnormal bony growths. Promotes and encourages research to find the cause, treatment and cure. Newsletter, networking, literature, advocacy, online chat, information and referrals, phone support and pen pals. Write: MHE Coalition, 6783 York Road, #104, Parma Heights, OH 44130-4596. Call Chele Zelina 440-842-8817 or 440-821-5038. Website: http://www.mhecoalition.org E-mail: chelez1@yahoo.com MHE and Me: A Support Group for Kids with MHE (Member of The MHE Coalition) National. Founded 1999. Provides peers and a supportive community to children suffering from multiple hereditary exostoses (a genetic disorder in which benign cartilage-capped bone tumors grow from growth plates of long bones or on the surface of flat bones). Develops information and literature to assist children and their families in dealing with the disease. Offers free Bumpy Bone Club membership to patients and their siblings. Provides We Care packages to children having surgery and their siblings. Advocacy, information and referrals, phone and e-mail support. Write: MHE and Me, c/o Susan Wynn, P.O. Box 651, Pine Island, NY 10969. Call 845-258-6058.

Website: http://www.mheandme.com E-mail: mheandme@yahoo.com MULTIPLE MYELOMA

NATIONAL | INTERNATIONAL | MODEL Amyloidosis Support Groups, Inc. National. 22 regional groups. Founded 2005.

Support, education and advocacy, for patients, caregivers, families, those who lost loved ones to amyloidosis and friends of amyloidosis patients. Also deals with multiple myeloma, peripheral neuropathy, familial amyloidosis and protein misfolding.

Telephone support network, pen pal program, educational and awareness materials, 147

national conference, advocacy, information and referrals. Online mutual aid activities include message board and mailing list. Assistance in starting and maintaining groups.

Write: Amyloidosis Support Groups, Inc., 232 Orchard Drive, Wood Dale, IL 60191.

Call 1-866-404-7539 (24 hr.); Fax: 847-350-0577. Website: http://www.amyloidosissupport.com Online Listserv: http://www.amyloidosisonline.com Awareness Materials: http://www.amyloididaware.com E-mail: muriel@finkelsupply.com International Myeloma Foundation (IMF) International network. 100+ groups.

Founded 1990. Goal is to improve the quality of life of myeloma patients while working toward prevention and a cure. The IMF operates a Myeloma Hotline, disseminates comprehensive printed and online information about myeloma, treatment options and disease management. Seminars and workshops for the patient community and medical professionals. Write: International Myeloma Foundation, 12650 Riverside Dr., Suite 206, North Hollywood, CA 91607. Call 1-800-452-2873 (Mon.-Fri., 9am-4pm PST) or 818-487-7455. Fax: 818-487-7454. Website: http://www.myeloma.org Email: theimf@myeloma.org MULTIPLE SCLEROSIS

NATIONAL | INTERNATIONAL | MODEL National Multiple Sclerosis Society (BILINGUAL) National. 1,200 groups. Founded 1946. Funds research for multiple sclerosis, provides information and referrals, offers support groups for patients and families, publishes a patient newsletter and a national magazine, offers professional education and newsletter. Write: National Multiple Sclerosis Society, 733 Third Ave., Third Floor, New York, NY 10017. Call 1-800-3444867. Website: http://www.nationalmssociety.org E-mail: contactusnmss@nmss.org MULTIPLE SYSTEM ATROPHY

NATIONAL | INTERNATIONAL | MODEL The Multiple System Atrophy Coalition National. Provides education, research, advocacy and support via blogs, forums, lists of local support groups and annual conferences, for patients, caregivers, family members and physicians. Call 1-866-7375999. Write: MSA Coalition, 8311 Brier Creek Parkway, Suite 105-434, Raleigh, NC 27617. Website: http://www.multiplesystematrophy.org (click on ‘Quick Links’ and ‘Support Group’.

MUSCULAR DYSTROPHY

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FSH Muscular Dystrophy Society National network. Founded 1991. Provides a grass-roots network of support, information, education and advocacy for individuals with facioscapulohumeral muscular dystrophy, facioscapulohumeral disease, or FSHD (aka Landouzy-Dejerine muscular dystrophy). Offers online and community support group meetings, newsletter, conferences and literature. The Society harnesses the power and insight of a patient-driven model and empowers patients by ensuring them a voice to convey what it is like to live with muscular dystrophy. Write: FSH Muscular Dystrophy Society, 450 Bedford St., Lexington, MA 02420. Call 781-301-6060.

Website: http://www.fshsociety.org To connect with their Yahoo and Facebook groups go to http://www.fshsociety.org/pages/comonline.html E-mail: info@fshsociety.org Muscular Dystrophy Association National. 200+ chapters. Founded 1950. Provides comprehensive health care, support services,, advocacy and education. Support programs include some 200 MDA-facilitated support groups located throughout the United States, MDA’s online care coordination tool myMuscleTeam, scheduled online chat sessions and active community on MDA’s Facebook, Twitter and YouTube pages.

Write: Muscular Dystrophy Association, 3300 E. Sunrise Dr., Tucson, AZ 85718-3299.

Call 1-800-572-1717; Fax: 520-529-5300. Website: http://www.mda.org E-mail: mda@mdausa.org Parent Project for Muscular Dystrophy Research, Inc. International network.

Founded 1994. Support for parents of children with Duchenne and Becker muscular dystrophy. To improve the treatment, quality of life and long-term outlook for all individuals affected by DMD through research, advocacy, education and compassion.

Provides user-friendly website with online forums, scientific and legislative conferences, newsletters, information on newest diagnosis tests, standards of care and research strategies. Write: Parent Project Muscular Dystrophy Research, Inc., 401 Hackensack Ave., 9th Floor, Hackensack, NJ 07601. Call 1-800-714-5437 or 201-2508440; Fax: 201-250-8453. Website: http://www.parentprojectmd.org E-mail: info@parentprojectmd.org

Society for Muscular Dystrophy Information International (SMDI) International.

Formed to help people share information, to link people with people and organizations concerned with their disorder, to share information to help people help themselves and to create public awareness of neuromuscular disorders/disabilities and the world’s organizations and support groups for the disorder. Publishes two quarterly newsletters.

Write: SMDI, PO Box 7490, Bridgewater, Nova Scotia, B4V 2X6 CANADA. Call 902685-3961; Fax: 902-685-3962. Website: http://nsnet.org/smdi

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MYASTHENIA GRAVIS

NATIONAL | INTERNATIONAL | MODEL Myasthenia Gravis Foundation of America, Inc. National. 16 chapters. Founded 1952. Promotes research and education into myasthenia gravis, a chronic neuromuscular disease. Provides supportive services for patients and families.

Information and referral. Newsletter, support groups, various web-based services, annual and scientific meetings. Write: Myasthenia Gravis Foundation, 355 Lexington Ave., 15th Floor, New York, NY 10017. Call 212-297-2156 or 1-800-541-5454; Fax: 212-370-9047 Website: http://www.myasthenia.org E-mail: mgfa@myasthenia.org MYELPHROLIFERATIVE DISEASE

NATIONAL | INTERNATIONAL | MODEL MPN Research Foundation International. Empowers and educates patients and families through online and local mutual support groups, their website, a newsletter and conferences. The three main myeloproliferative neoplasms are Polycythemia Vera (PV), Essential Thrombocythemis (ET) and Primary Myelofibrosis (PMF). Write: MPN Research Foundation, 180 N. Michigan Ave, Ste 1870, Chicago, IL 60601. Call 312683-7249. Website: http://www.mpnresearchfoundation.org/support-groups Email: mwoehrle@mpnresearchfoundation.org MYOSITIS

NATIONAL | INTERNATIONAL | MODEL The Myositis Association International network. 65 groups. Founded 1993.

Dedicated to serving those with polymyositis, dermatomyositis, juvenile myositis and inclusion body myositis. Provides education and support. Also serves as a clearinghouse between patients and scientists. Newsletter, research reviews, literature and phone support. Area meetings available in limited areas, as well as annual conference. Guidelines available for starting similar groups. Fundraising for research.

Dues $35/yr. Write: The Myositis Association, 1737 King St., Suite 600, Alexandria, VA 22314. Fax: 202-466-8940. Website: http://www.myositis.org E-mail: tma@myositis.org

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Myositis Online Support Group Online. Provides a community of support for patients affected my myositis. Site includes groups, blogs, forums and more. Website: http://www.myositissupport.org MYOTONIA CONGENITA | MYELOPROLIFERATIVE DISEASE

ONLINE | TELEPHONE MPD-Net Online network. 1800 members. Founded 1989. Support network enabling persons with myeloproliferative disease to share their experiences and problems.

Publishes materials pertaining to MPD, newsletter, phone support, conferences, information and referrals. Online listserv to exchange e-mails about the disease.

Website: http://www.mpdinfo.org Myotonia Congenita Online. Founded 2001. Forum for people with myotonia congenita as well as their friends and families. Ask questions and share tips for living with myotonia congenita. Website: http://www.myotoniacongenita.org NAGER SYNDROME

NATIONAL | INTERNATIONAL | MODEL Foundation for Nager and Miller Syndromes International. Founded 1989.

Networking for families that are affected by Nager or Miller syndromes. Provides referrals, library of information, phone support, newsletter, brochures and scholarships for Camp About Face. Write: Foundation for Nager and Miller Syndromes, c/o DeDe Van Quill, 13210 South East 342nd St., Auburn, WA 98092. Call 1-800-507-3667 or 253-333-1483; Fax: 253-288-7679. Website: http://www.fnms.net E-mail: ddfnms@aol.com NARCOLEPSY

NATIONAL | INTERNATIONAL | MODEL Narcolepsy Network National. 100 affiliated support groups. Founded 1986. Support for persons with narcolepsy or other hypersomnias seeking to optimize their quality of life. Offers communication, advocacy, research, education, support, help with coping skills, family and community problems. Quarterly newsletters, yearly conference, phone support and support group development guidelines. Individual dues $40/yr.

Write: Narcolepsy Network, 129 Waterwheel Lane, North Kingstown, RI 02852. Call 1888-292-6522 or 401-667-2523; Fax: 401-633-6567. Website: http://www.narcolepsynetwork.org E-mail: narnet@narcolepsynetwork.org NEPHROTIC SYNDROME 151

NATIONAL | INTERNATIONAL | MODEL NephSpace - Nephrotic Syndrome and FSFS Support Group Online. Connects patients, families, friends and caregivers for support and inspiration. Call 1-866-6374287. Website: http://www.nephcure.org/nephspace E-mail: info@nephcure.org NEURODEGENERATION WITH BRAIN IRON ACCUMULATION

NATIONAL | INTERNATIONAL | MODEL NBIA Disorders Association International network. Founded 1996. Provides emotional support to families affected by neurodegeneration with brain iron accumulation, a group of rare progressive neurological disorders with high brain iron and a movement disorder, along with various other symptoms. Educates public on NBIA, supports and monitors research and awards research grants. Newsletter, literature, bi-annual conferences, online listserv, family networking program and advocacy efforts. Write: NBIA Disorders Association, 2082 Monaco Ct., El Cajon, CA 92019-4235. Call 619-588-2315; Fax: 619-588-4093. Website: http://www.nbiadisorders.org E-mail: info@nbiadisorders.org NEUROPATHY

NATIONAL | INTERNATIONAL | MODEL Amyloidosis Support Groups, Inc. National. 22 regional groups. Founded 2005.

Support, education and advocacy, for patients, caregivers, families, those who lost loved ones to amyloidosis and friends of amyloidosis patients. Also deals with multiple myeloma, peripheral neuropathy, familial amyloidosis and protein misfolding.

Telephone support network, pen pal program, educational and awareness materials, national conference, advocacy, information and referrals. Online mutual aid activities include message board and mailing list. Assistance in starting and maintaining groups.

Write: Amyloidosis Support Groups, Inc., 232 Orchard Drive, Wood Dale, IL 60191.

Call 1-866-404-7539 (24 hr.); Fax: 847-350-0577. Website: http://www.amyloidosissupport.com Online Listserv: http://www.amyloidosisonline.com Awareness Materials: http://www.amyloidaware.com E-mail: muriel@finkelsupply.com Neuropathy Association National. 150 support groups. Founded 1995. Provides support, education and advocacy for persons with peripheral neuropathy. Promotes and funds research into the cause and cure. Information, referrals, e-newsletter, literature, social media channels, referrals to support groups and doctors. Write: Neuropathy Association, 60 E. 42nd St., Room 942, New York, NY 10165. Call 212692-0662; Fax: 212-692-0668. Website: http://www.neuropathy.org E-mail: info@neuropathy.org

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NEYROFIBROMATOSIS

NATIONAL | INTERNATIONAL | MODEL Children’s Tumor Foundation (BILINGUAL) National. 50 chapters. Founded 1978.

Support for patients with neurofibromatosis and their families. Promotes and supports research on the causes of, and cure for NF. Provides information, quarterly newsletter, assistance and education. Dues $40/year. Write: Children’s Tumor Foundation, 120 Wall St., 16th Floor, New York, NY 10005. Call 1-800-323-7938 or 212-344-6633; Fax: 212-747-0004. Website: http://www.ctf.org E-mail: info@ctf.org Neurofibromatosis Network National. 10 regional groups. Founded 1988.

Dedicated to individuals and families affected by the neurofibromatoses (NF-1, NF-2 and Schwannomatosis) through education, support, a summer camp, clinical and research programs. Newsletter, networking, printed materials, phone support, information and referrals. Assistance in starting groups. Write: Neurofibromatosis, Inc., P.O. Box 66884, Chicago, IL 60666. Call 630-530-1115 or 1-800-942-6825 (patient inquiries). Website: http://www.nfnetwork.org E-mail: admin@nfnetwork.org NIEMANN-PICK DISEASE

NATIONAL | INTERNATIONAL | MODEL National Niemann-Pick Disease Foundation, Inc. National network. Founded 1992.

Provides support for families affected by Niemann-Pick disease. Promotes and supports research. Publishes newsletter, e-mail list. Hosts annual family conferences.

Write: NPD Fdn., Inc., P.O. Box 49, 401 Madison Ave., Suite B, Fort Atkinson, WI 53538. Call 1-877-287-3672. Website: www.nnpdf.org E=mail: nnpdf@nnpdf.org NONKETOTIC HYPERGLYCINEMIA

NATIONAL | INTERNATIONAL | MODEL NKH International Family Network International. Founded 1995. Support and networking for parents of children with nonketotic hyperglycinemia (NKH), an inherited metabolic disorder. Newsletter, online network, discussion board, phone support, information and referrals. Write: NKH International Family Network, 481 Canisteo St., Hornell, NY 14843. Call 607-324-3804. Website: http://www.nkh-network.org Email: catrosenkh@yahoo.com NYSTAGMUS

NATIONAL | INTERNATIONAL | MODEL

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American Nystagmus Network National. Founded 1999. Network of persons affected by nystagmus, an involuntary, rapid movement of the eyeball. Open to parents of affected children, adults with nystagmus and interested professionals. Provides general information. Promotes research into cause and cure. E-mail discussion group, discussion board, bi-annual newsletter and conferences. Write: American Nystagmus Network, Inc., 303-D Beltline Place #321, Decatur, AL 35603. Website: http://www.nystagmus.org E-mail: webmaster@nystagmus.org OPSOCLONUS-MYOCLONUS SYNDROME

NATIONAL | INTERNATIONAL | MODEL Opsoclonus-Myoclonus Support Network National network. Founded 1994.

Networking for parents of children with opsoclonus-myoclonus syndrome through phone and online messages. Doctor referrals, consultation, literature and current research information. Write: Sandra Greenberg, 2116 Casa Linda Dr., West Covina, CA 91791. Call 626-315-8125. E-mail: sangreenca@yahoo.com ORGAN TRANSPLANT RECIPIENT

NATIONAL | INTERNATIONAL | MODEL Second Wind Lung Transplant Association, Inc. International network. Founded 1995. Opportunity for persons who have undergone, or who will undergo, lung transplants to share their stories on a web page. Developed by transplant patients.

Message board. Write: Second Wind Lung Transplant Association Inc., 2781 Chateau Circle, Columbus, OH 43221. Call 1-888-855-9463. Website: http://www.2ndwind.org E-mail: keelerc768@aol.com TRIO (Transplant Recipients International Organization) International. 43 chapters. Founded 1983. Works to improve the quality of life of transplant candidates, recipients, donors and their families. TRIO serves its members in the areas of donor awareness, support, education and advocacy. Annual conference, bi-monthly newsletter, monthly membership update, support network and chapter development assistance. Offers information online on finding local chapters. Write: TRIO, 13705 Currant Loop, Gainesville, VA 20155-3031. Call 1-800-874-6386. Website: http://www.trioweb.org E-mail: info@trioweb.org ORTHOPEDIC (KNEE, HIP, BACK, SHOULDER)

ONLINE | TELEPHONE Totally Hip Online. Founded 1997. Support to help relieve the fear of total hip replacement surgery, share experiences and offer morale as well as spiritual support to patients. Helps answer questions on hip replacement. Also, forum to discuss other 154

joint problems. Click on bulletin board at website for message exchange. Website: http://www.totallyhip.org OSTEOGENESUS IMPERDECTA

NATIONAL | INTERNATIONAL | MODEL Osteogenesis Imperfect Foundation National. Provides support for individuals with osteogenesis imperfecta. Helps to start local groups, online chat and links to online and face-to-face support groups. Click on ‘INFORMATION & SUPPORT’. Call 301947-0083 or toll-free 1-800-981-2663 (9-5 ET Mon-Fri); Fax 301-947-0456. Write: OIF, 804 W. Diamond Ave, Ste 210, Gaithersburg, MD 20878. Website: http://www.oif.org E-mail: bonelink@oif.org OSTEONECROSIS | AVASCULAR NECROSIS

NATIONAL | INTERNATIONAL | MODEL ON/AVN Support Group International Association, Inc. International. Support for persons who suffer from osteonecrosis (aka avascular necrosis). Goal is to inform and educate the world about osteonecrosis and offer support to both those with ON/AVN and their families. Provides information and referrals. All ages groups are welcome.

Open to those with other chronic bone, joint or muscular conditions and persons with joint replacements. Write: ON/AVN Support Group International Association, 7408 Henry Ave., Philadelphia, PA 19128. Website: http://www.avnsupport.org OSTEOPOROSIS

NATIONAL | INTERNATIONAL | MODEL National Osteoporosis Foundation National. 80+ affiliated support groups.

Founded 1984. Dedicated to reducing the widespread prevalence of osteoporosis through programs of research, education and advocacy. Provides referrals to existing support groups, educational materials, as well as free resources and materials to assist people to start groups. Newsletter, conferences, information and referrals. Write: National Osteoporosis Foundation, 1150 17th St. NW, Suite 850, Washington, DC 20036. Call 1-800-223-9994; Fax: 202-223-2237. Website: http://www.nof.org OSTOMY

NATIONAL | INTERNATIONAL | MODEL United Ostomy Associations of America National. 350 affiliates. Founded 2005.

Dedicated to helping every person with an ostomy and related surgeries return to 155

normal living. Also has support groups for parents of children with ostomies, teens, young adults, gay, lesbian and transgenders and those who have had a continent diversion. Provides education, support to local groups, national identity and affiliate development help, visitation program and quarterly magazine. Chapter development help. Local group directory on website. Write: United Ostomy Associations of America., P.O. Box 512, Northfield, MN 55057. Call 1-800-826-0826. Website: http://www.ostomy.org E-mail: oa@ostomy.org

ONLINE | TELEPHONE OstomySupport Online. 600+ members. Founded 2000. Support and education for people with any kind of ostomy, or those who are facing the possibility of an ostomy in the future. Family and friends welcome. Opportunity to freely share ideas, frustrations and experiences. Website: http://health.groups.yahoo.com/group/ostomysupport E-mail: ostomysupport-owner@yahoogroups.com OXALOSIS & HYPEROXALURIA

NATIONAL | INTERNATIONAL | MODEL Oxalosis and Hyperoxaluria Foundation International network. Founded 1989.

Provides support and current information for patients, families and medical professionals in the field of primary hyperoxaluria and oxalate stone disease. Educates the public, newsletter, phone support, conferences, funds research, information and referrals. Write: Oxalosis Hyperoxaluria Foundation, 201 East 19th St., #12E, New York, NY 10003. Call 1-800-643-8699 or 212-777-0470; Fax: 212-777-0471. Website: http://www.ohf.org E-mail: execdirector@ohf.org PAINLESS | NONISCHEMIC PRIAPISM

NATIONAL | INTERNATIONAL | MODEL Large Penis Support Group (LPSG) International|Online. Founded 1999.

Community support dedicated to relieving as much pain and suffering from those individuals who suffer from a condition called painless or nonischemic priapism or megalophallus. Offers moderated message boards, articles, blogs and more. Talk with others who face the same circumstances of having painless priapis (megalophallus) which can be a very difficult condition with which to live. Site offers opportunities for men to share concerns, embarrassment, to help ease problems of having a megalophallus such as physical discomfort; erectile dysfunctions, intimacy issues that bring pain instead of pleasure; erections leading to lightheadedness or dizziness (which may be the result of medication or a co-existing condition) and other issues.

One need not suffer alone; joining with others can help make this problem seem less 156

difficult. Open to spouses and partners. Website: http://www.lpsg.org E-Mail: help@lpsg.com PANHYPOPITUITARISM

NATIONAL | INTERNATIONAL | MODEL Panhypopituitarism Division International network. Founded 1990. Provides support for families affected by panhypopituitarism. Newsletters, updated medical information, phone support, annual conventions and Kids Program. Online assistance available in finding or forming local support groups. Yearly dues $35 (US); $40 (Canada); $45 (overseas). Write: Panhypopituitarism Division, MAGIC Foundation, 6645 W. North Ave., Oak Park, IL 60302. Call 1-800-362-4423; Fax: 708-383-0899.

Website: http://www.magicfoundation.org E-mail: contactus@magicfoundation.org PAPILLOMATOSIS

NATIONAL | INTERNATIONAL | MODEL Recurrent Respiratory Papillomatosis Foundation National network. Founded 1992. Networking for families affected by recurrent respiratory papillomatosis (RRP) and interested professionals. Website, e-mail and phone support. Online support and referrals to local support groups. Write: Recurrent Respiratory Papillomatosis Foundation, P.O. Box 6643, Lawrenceville, NJ 08648-0643. Call Bill Stern 609-5301443; Fax: 1-866-498-7559. Website: http://www.rrpf.org E-mail: bills@rrpf.org PARKINSON’S DISEASE

NATIONAL | INTERNATIONAL | MODEL American Parkinson Disease Association, Inc. National. 59 chapters. Founded 1961. Network of 300 support groups for patients and families. Offers support, online booklets and referrals. Chapter development guidelines and quarterly newsletter.

Promotes research. Information and referral centers nationwide. Write: American Parkinson Disease Association, 135 Parkinson Ave., Staten Island, NY 10305. Call 1800-223-2732 or 718-981-8001 (Mon.-Fri., 8:30am-4:30pm EST); Fax: 718-981-4399.

Website: http://www.apdaparkinson.org

ONLINE | TELEPHONE Parkinson’s Disease Telephone Group Telephone. Professionally-run. Phone-based group which provides support and education for people with Parkinson’s disease and their family, both vets and non-vets are welcome. Meets 2nd Tues., 1-2pm (EST) via 157

toll-free phone. Call 1-800-952-4852 and, when prompted, enter pin 54321 followed by the pound sign (#).

PARRY-ROMBERG SYNDROME

ONLINE | TELEPHONE The Romberg’s Connection Online. Founded 1997. Offers mutual support for persons affected by Parry Romberg’s syndrome (aka progressive facial hemiatrophy)and their families. Parry-Romberg syndrome is a rare disorder causing atrophy to usually one half of the face. Website: http://www.therombergsconnection.com E-mail: rombergs@hotmail.com PEDIATRIC AUTOIMMUNE NEUROPSYCHIATRIC DISORDERS ASSOCIATED WITH STREP

NATIONAL | INTERNATIONAL | MODEL PANDAS Network (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep) International. Provides information on local support groups (click on “Helpful Resources” in the top menu bar, for “Support Groups”), resources, and library. PANDAS has been described as a syndrome characterized by an onset of obsessive-compulsive disorder and/or tic disorder behaviors such as Tourette syndrome, possibly related to a child having a Group A Beta-Hemolytic Strep (GABHS) infection, such as strep throat or scarlet fever. Website: http://www.pandasnetwork.org or http://www.pandasnetwork.org/resources-newresearch/support-groups E-mail: pandasnetwork@gmail.com PEMPHIGUS | HAILEY HAILEY

NATIONAL | INTERNATIONAL | MODEL International Pemphigus Foundation International network. 16 affiliated groups.

Founded 1994. Provides support and information on pemphigus and related autoimmune blistering diseases for patients, families, friends and the medical community. Literature, newsletter, information, referrals, advocacy and phone support.

Online support group and listserv. Write: International Pemphigus Foundation, 2701 Cottage Way, #16, Sacramento, CA 95825. Call 916-922-1298; Fax: 916-922-1458.

Website: http://www.pemphigus.org E-mail: info@pemphigus.org PETER’S ANOMALY

ONLINE | TELEPHONE Peter’s Anomaly Support Group Online. Support for families of children with Peter’s anomaly. Offers message board and forum. Also many useful links. Website: http://www.petersanomaly.org (click link “enter forum click here”) 158

PEYRONIE’S DISEASE

ONLINE | TELEPHONE The Peyronie’s Disease Society Online. 1500+ members. Provides support for men with Peyronies Disease, sometimes called Induratio Penis Plastica (IPP), is actually a scarring condition that results in deformity of the penis (typically, onset of a bent or curved penis). Website: http://www.peyroniessociety.org; http://www.peyroniessociety.org/wormensforum.htm (Women’s Forum); and http://www.peyroniesforum.net (Men’s Forum) E-mail: admin@peyroniessociety.org and christine@peyroniessociety.org (Women’s forum moderator) PIERRE ROBIN

NATIONAL | INTERNATIONAL | MODEL Pierre Robin Network National network. Founded 1999. Support and education for individuals, parents, caregivers and professionals dealing with Pierre Robin syndrome or sequence. Literature, newsletter, information, advocacy, online e-mail group and bulletin board. Outreach committee comprised of families worldwide available to correspond via mail, phone, in person or e-mail. Write: Pierre Robin Network, 3604 Biscayne, Quincy, IL 62305. Fax: 217-224-6659. Website: http://www.pierrerobin.org E-mail: info@pierrerobin.org PITUITARY DISORDERS

NATIONAL | INTERNATIONAL | MODEL Pituitary Network Association International network. Founded 1992. Support for persons with all types of pituitary disorders and diseases. Promotes early diagnosis, medical and public awareness along with continued research to find a cure. Phone support, information and referrals, webinars and patient conferences. Write: Pituitary Network Association, P.O. Box 1958, Thousand Oaks, CA 91358. Call 805-499-9973; Fax: 805-480-0633. Website: http://www.pituitary.org E-mail: pna@pituitary.org POLIO

NATIONAL | INTERNATIONAL | MODEL Post-Polio Health International National network. Founded 1958. Information on late effects of polio for survivors and health professionals. International conferences.

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Guidelines and workshops for support groups. Membership $30/yr. Write: Post-Polio Health International, 4207 Lindell Blvd., Suite 110, St. Louis, MO 63108-2930. Call 314-534-0475; Fax: 314-534-5070. Website: http://www.post-polio.org E-mail: info@post-polio.org POLYMICROGYRIA

ONLINE | TELEPHONE Polymicrogyria (PMG) Support Group Online. Support for families and relatives of children with Polymicrogyria (PMG), a rare brain disorder of neuronal migration resulting in structurally abnormal cerebral hemispheres. Most children with Polymicrogyria, but not all, have some degree of global developmental disabilities or delays, seizures, feeding difficulties, respiratory problems and motor dysfunction.

Website: http://groups.yahoo.com/neo/groups/polymicrogyria/info and http://homepage.ntlworld.com/foliot/liss/index.html E-mail: polymicrogyriaowner@yahoogroups.com POLYSYSTIC OVARIAN SYNDROME

NATIONAL | INTERNATIONAL | MODEL Polycystic Ovarian Syndrome Association - PCOSupport National. Provides support for and operated by women with polycystic ovarian syndrome. Write: PCOSupport, 4230 N. Oakland Ave., #204, Shorewood, WI 53211. Website: http://www.pcosupport.org E-mail: info@pcosupport.org PRADER-WILLI SYNDROME

NATIONAL | INTERNATIONAL | MODEL Prader-Willi Syndrome Association USA National. Founded 1975. Support and education for anyone impacted by Prader-Willi syndrome. PWSA promotes families and professionals working together to raise awareness, advocacy and fund research to enhance the quality of life of those affected. Write: Prader-Willi Syndrome Association, 8588 Potter Park Dr., Suite 500, Sarasota, FL 34238. Call 1-800-926-4797 or 941-3120400; Fax: 941-312-0142. Website: http://www.pwsausa.org PRECOCIOUS PUBERTY

NATIONAL | INTERNATIONAL | MODEL Precocious Puberty Support Network National network. Founded 1989. Network and exchange of information for children who are experiencing precocious puberty and their families. Information and referrals, phone support, pen pals, annual convention, 160

conferences and literature. Newsletter. Yearly membership $35 (US); $40 (Canada); $45 (overseas). Write: Precocious Puberty Support Network, c/o MAGIC Foundation, 6645 W. North Ave, Oak Park, IL 60302. Call 1-800-362-4423 or 708-383-0808; Fax: 708-383-0899. Website: http://www.magicfoundation.org E-mail: mary@magicfoundation.org PREMATURE OVARIAN FAILURE

NATIONAL | INTERNATIONAL | MODEL International Premature Ovarian Failure Association, Inc. International network.

25 groups. Founded 1995. Peer-to-peer support for women who have premature ovarian failure, premature/primary ovarian insufficiency, and premature menopause.

Phone support, literature, information and referrals and local support groups. Write: IPOFA, P.O. Box 23643, Alexandria, VA 22304. Call 703-913-4787. Website: http://www.ipofa.org PREMENSTRUAL DYSPHORIC DISORDER

ONLINE | TELEPHONE PMDD Survivors Online. Closed Facebook Group. Support for women who are suffering from Premenstrual Dysphoric Disorder (PMDD), a severe form of premenstrual syndrome. Symptoms of PMDD include severe mood swings, anxiety, sleep disruptions, irritability and others. Website: https://www.facebook.com/groups/pmddsurvivors E-mail: emmajcobley@yahoo.com PRIMARY IMMUNODEFICIENCY

NATIONAL | INTERNATIONAL | MODEL Immune Deficiency Foundation National network. Founded 1980. Provides support and information for persons with any type of primary immune deficiency disorder.

Offers resources, discussion forum, peer support volunteer program, online and printed newsletters. Write: IDF, 110 West Road, Suite 300, Towson, MD 21204. Call 1800-296-4433 (Mon.-Fri., 9am-5pm EST); Fax: 410-321-9165. Website: http://www.primaryimmune.org E-mail: idf@primaryimmune.org PRIMARY LATERAL SCLEROSIS

NATIONAL | INTERNATIONAL | MODEL Spastic Paraplegia Foundation, Inc. National. Founded 2002. Offers support and information to those affected by primary lateral sclerosis and hereditary spastic 161

paraplegia. Supports research. Offers regional and e-mail support groups, online chat group, newsletter and information. Write: Spastic Paraplegia Foundation, Inc., PO Box 1208, Fortson, GA 31808. Call 1-877-773-4483. Website: http://www.spfoundation.org PROGRESSIVE SUPRANUCLEAR PALSY

NATIONAL | INTERNATIONAL | MODEL CurePSP (Fnd for PSP/CBD and Related Brain Diseases, Inc.) International network. 75 affiliated groups. Founded 1990. Provides support and advocacy for patients with progressive supranuclear palsy, corticobasal degeneration, multiple system atrophy and their families. Offers newsletter, phone support, conferences, listserv, educational materials, assistance in starting support groups, information and referrals. Write: CurePSP, 30 East Padonia Rd., Suite 201, Timonium, MD 21093. Call 1-800-457-4777 or 410-785-7004. Website: http://www.curepsp.org E-mail: info@curepsp.org PROSOPAGNOSIA – FACE BLINDNESS

ONLINE | TELEPHONE Faceblind: Face Blindness - Prosopagnosia Online. Support for individuals with prosopagnosia or face blindness. Prosopagnosia is the inability to recognize/identify familiar people. Family, friends, researchers, counselors, faculty and students are welcome. Website: http://tech.groups.yahoo.com/group/faceblind E-mail: faceblind@yahoogroups.com or blankface@earthlink.net PROSTATE PROBLEMS

NATIONAL | INTERNATIONAL | MODEL Patient Advocates for Advanced Cancer Treatments (PAACT) International.

Founded 1984. Provides support and advocacy for prostate cancer patients, their families and the general public at risk. Information relative to the advancements in the detection, diagnosis, evaluation and treatment of prostate cancer. Information, referrals, phone help, conferences and quarterly newsletters. For local support groups or help in starting a local group call them. Write: PAACT, 1143 Parmelee Ave NW, Grand Rapids, MI 49504. Call 616-453-1477; Fax: 616-453-1846. Website: http://www.paactusa.org E-mail: paact@paactusa.org Us TOO International, Inc. International. 300 affiliated groups. Founded 1990. Offers support, information and education for prostate cancer patients, their families and 162

friends. Provides newsletter, information, phone support and assistance in starting new groups. Write: Us TOO International, Inc., 2720 S. River Rd., Ste 112, Des Plaines, IL 60018. Call 1-800-808-7866 or 630-795-1002 (Mon.-Fri., 9am-5pm CST); Fax: 630795-1602; Website: http://www.ustoo.org E-mail: ustoo@ustoo.org PRUNE BELLY SYNDROME

ONLINE | TELEPHONE Prune Belly Syndrome Network Online. Online community that provides support, information, access to website content, newsletters, updates, private forum, events and more. Call 855-275-7276. Website: http://prunebellysyndromenetworkinc.camp9.org PSEUDOXANTHOMA ELASTICUM

NATIONAL | INTERNATIONAL | MODEL National Association for Pseudoxanthoma Elasticum National network. Founded 1988. Support, education, research and advocacy for persons with Pseudoxanthoma Elasticum, their families, interested others and professionals. Phone support, newsletter, information and referrals. Donations appreciated and tax-deductible. Write: National Association for Pseudoxanthoma Elasticum, 8760 Manchester Rd., St. Louis, MO 63144-2724. Call 314-962-0100 (voice/fax). Website: http://www.pxenape.org Email: napestlouis@sbcglobal.net PXE International, Inc. International. 50 affiliated groups. Founded 1995. Supports patients and educates clinicians. Offers support groups, listservs, literature, semiannual newsletter, phone and mail contacts. Offers assistance in starting similar groups. Initiates, funds and manages research. Write: PXE International, Inc., 4301 Connecticut Ave. NW, Suite 404, Washington, DC 20008-2369. Call 202-362-9599; Fax: 202-966-8553. Website: http://www.pxe.org E-mail: info@pxe.org PSORIASIS

NATIONAL | INTERNATIONAL | MODEL National Psoriasis Foundation National. Founded 1968. Support and information for people who have psoriasis and psoriatic arthritis, their families and friends.

Education to increase public awareness of these disorders. Fund-raising for research, quarterly magazine for members, educational booklets and physician directory. Offers online message board. Write: National Psoriasis Foundation, 6600 SW 92nd Ave., Suite 300, Portland, OR 97223. Call 503-244-7404 or 1-800-723-9166 (free packet of 163

information); Fax: 503-245-0626. Website: http://www.psoriasis.org E-mail: getinfo@psoriasis.org PULMONARY HYPERTENSION

NATIONAL | INTERNATIONAL | MODEL Pulmonary Hypertension Association National network. 235+ support groups.

Founded 1990. Support & information for patients with pulmonary hypertension (a cardio-vascular and pulmonary disease), their families and medical professionals.

Encourages research, promotes awareness and provides resource referrals.

Networking, phone help, pen pals, newsletter and assistance in starting groups.

Membership $15. Write: Pulmonary Hypertension Association, 801 Roeder Rd., Suite 1000, Silver Spring, MD 20910. Call 1-800-748-7274 or 301-565-3004; Fax: 301-5653994. Website: http://www.phassociation.org E-mail: pha@phassociation.org RAYNAUD’S DISEASE

NATIONAL | INTERNATIONAL | MODEL Raynaud’s Association, Inc. National. Founded 1992. Mutual support group to help Raynaud’s sufferers cope with day-to-day activities to maintain or improve their quality of life. Aims to increase awareness of the disease among the public and medical communities. Assists in supporting treatment research efforts. Newsletter, special event meetings, literature, information and referrals. Dues $20 (optional). Write: Raynaud’s Association, 11 Topstone Rd., Redding, CT 06896. Call Lynn Wunderman 1-800-280-8055; Fax: 203-664-1531. Website: http://www.raynauds.org E-mail: info@raynauds.org REFLEX SYMPATHETIC DYSTROPHY

NATIONAL | INTERNATIONAL | MODEL Reflex Sympathetic Dystrophy Syndrome Association National. Encourages individuals to offer each other emotional support within affiliate groups. Promotes public and professional awareness and to educate those afflicted with the syndrome, their families, friends, insurance and healthcare providers. To find local support in ones state visit website: http://www.rsds.org/supportgroups.html RETT SYNDROME

NATIONAL | INTERNATIONAL | MODEL

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International Rett Syndrome Foundation International. 17 affiliated groups.

Founded 1985. For parents, interested professionals and others concerned with Rett syndrome. Provides information and referral, peer support among parents and funds research. Quarterly newsletter. Write: International Rett Syndrome Foundation, 4600 Devitt Dr., Cincinnati, OH 45246. Call 1-800-818-7388 or 513-874-3020; Fax: 513-8742520. Website: http://www.rettsyndrome.org E-mail: admin@rettsyndrome.org RESPIRATORY DISEASE | EMPHYSEMA

NATIONAL | INTERNATIONAL | MODEL Alpha-1 Foundation International. 54 affiliated groups. Founded 1988. Support, advocacy and information for persons with alpha-1 antitrypsin deficiency and their families. Networking of members through newsletter and support groups across the country. Sharing of current information on treatments and research. Newsletter, group development guidelines, educational materials and advocacy information. Write: Alpha-1 Foundation, 3300 Ponce de Leon Blvd., Coral Gables, FL 33134. Call 1-888825-7421 or 305-648-0088. Website: http://www.alpha1.org E-mail: info@alpha1.org Asthma and Allergy Foundation of America National. 100 affiliated groups. 5 chapters. Founded 1953. Provides support and information for persons with asthma and/or allergies through support groups, information and referrals and advocacy.

Supports research, educates public about allergies and asthma. Lists groups nationwide. Assists in starting new groups. Write: AAFA, 8201 Corporate Dr., Suite 1000, Landover, MD 20785. Call 1-800-727-8462 or 1-800-7-ASTHMA (Mon.-Fri., 10am-3pm EST). Website: http://www.aafa.org click on “Find a Support Group.” Email: info@aafa.org Coalition for Pulmonary Fibrosis National. 55 affiliated groups. 25,000 members.

Founded 2001. Information, resources, educational materials and support for patients with pulmonary fibrosis. Write: Coalition for Pulmonary Fibrosis, 10866 W. Washington Blvd., Suite 343, Culver City, CA 90232. Call 1-888-222-8541. Website: http://www.coalitionforpf.org E-mail: info@coalitionforpf.org Pulmonary Fibrosis Foundation National. Provides support for individuals with pulmonary fibrosis. Dedicated to assisting the pulmonary fibrosis (PF) support group community as well as aiding in the establishment of new PF in-person and online support groups globally. To find a wide selection of support groups click on ‘SUPPORT GROUPS’. Call 1-888-733-6741; Fax: 1-866-587-9158. Write: PFF, 230 East Ohio St., Ste 304, Chicago, IL 60611-3201. Website: http://www.pulmonaryfibrosis.org Email info@pulmonaryfibrosis.org 165

ONLINE | TELEPHONE COPD International Online. Provides support to persons diagnosed with COPD (Chronic Obstructive Pulmonary Disease) as well as their caregivers via message boards, chatrooms and e-mail discussion groups (including a quit smoking group).

Gives information on local community support groups, guides on how to start and run a local community COPD group. Website: http://www.copd-international.com COPD Survivors Online. Provides support for patients diagnosed with COPD which includes emphysema and/or chronic bronchitis. Website: http://health.groups.yahoo.com/group/copdsurvivors and https://groups.yahoo.com/neo/groups/copdsurvivors2/info E-mail: copdsurvivors-owner@yahoogroups.com and copdsurvivors2@yahoogroups.com COPD Support, Inc. Online. Support and sharing of ideas and experiences for persons with COPD (Chronic Obstructive Pulmonary Disorder) and their caregivers.

Mailing list, chatroom, forum and Facebook page. Groups include: patients, caregivers, stop smoking, exercise, “Watch” program for those who live alone, and “Smiles of Sunshine” to cheer those who are not well. Website: http://www.copd-support.com E-mail: management@copd-support.com EFFORTS Online. Support for persons afflicted with emphysema. Offers information on local support groups. Forum for sharing ideas and help in dealing with emphysema.

Listserv. Advocacy for research. Write: EFFORTS, PO Box 20241, Kansas City, MO 64195-0241. Call 1-866-END-COPD. Website: http://www.emphysema.net/bindex.html ROBINOW SYNDROME

NATIONAL | INTERNATIONAL | MODEL Robinow Syndrome Foundation National network. Founded 1994. Aim is to locate, educate and support persons affected by Robinow syndrome (also known as fetal face syndrome) a very rare, genetic dwarfing syndrome. Online support, biennial conventions and family networking. Write: Robinow Syndrome Foundation, c/o Karla Kruger, P.O. Box 934, Anoka, MN 55303. Call 763-291-7190. Website: http://www.robinow.org E-mail: kmkruger@comcast.net RUBINSTEIN-TAYBI SYNDROME

NATIONAL | INTERNATIONAL | MODEL

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Special Friends Foundation National network. 465 member families. Founded 1984. Mutual support, information and sharing for parents of children with RubinsteinTaybi syndrome. Phone contact, parent contact list, chatroom and listserv. Write: Special Friends Foundation, P.O. Box 313, Windham, NH 03087. Call 1-866-3169029; Fax: 603-552-5795. Website: http://www.rubinsteintaybi.com E-mail: lbaxter@ruraltel.net RUSSELL-SILVER SYNDROME

NATIONAL | INTERNATIONAL | MODEL Russell-Silver Syndrome Support Network National network. Founded 1989.

Network and exchange of information for parents of children with Russell-Silver syndrome. Information and referrals, phone support, pen pals, conferences, annual convention and literature. Annual membership dues $35 (US); $40 (Canada); $45 (International). Write: Russell-Silver Syndrome Support Network, c/o MAGIC Foundation, 6645 W. North Ave., Oak Park, IL 60302. Call 1-800-362-4423 or 708383-0808; Fax: 708-383-0899. Website: http://www.magicfoundation.org E-mail: mary@magicfoundation.org SARCOIDOSIS

NATIONAL | INTERNATIONAL | MODEL Foundation for Sarcoidosis Research, The National network. Founded 2000.

Provides information, resources and research news on sarcoidosis (a multi-system disease that causes inflammation of the body’s tissues) to patients, their families and physicians. Online support offers patients a safe environment to share their stories and participate in discussion groups. Provides literature on how to start a support group.

Write: Foundation for Sarcoidosis Research, 1820 West Webster Ave., Ste. 304, Chicago, IL 60614. Call 312-341-0500. Website: http://www.stopsarcoidosis.org Email: info@stopsarcoidosis.org SCLERODERMA

NATIONAL | INTERNATIONAL | MODEL International Scleroderma Network International. Founded 1998. Provides support for individuals with Scleroderma. Click on ‘SUPPORT’ for a wide range of support and lists of national, international and online support groups. Under ‘SUPPORT’ find ‘SCLERO FORUMS’ for online support, chat, blogs, videos and more. Call 1-800-5647099 or 952-831-3091. Write: ISN, 7455 France Ave S #266, Edina, MN 55435.

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Website: http://www.sclero.org E-mail: isn@sclero.org

Scleroderma Foundation National. 23 chapters, 170 affiliated groups. Founded 1998. Dedicated to providing emotional support to people with scleroderma, their families and caregivers. Sponsors scleroderma education and public awareness events and funds research. Referrals to local support groups and physicians.

Advocacy program and annual conference. Online message board. Dues $25/yr.

Write: Scleroderma Foundation, 300 Rosewood Dr., Suite 105, Danvers, MA 01923.

Call 1-800-722-4673 or 978-463-5843 (Mon.-Fri., 8:30am-5pm EST); Fax: 978-4635809. Website: http://www.scleroderma.org E-mail: sfinfo@scleroderma.org SCOLIOSIS

NATIONAL | INTERNATIONAL | MODEL Curvy Girls “We Got Your Back� Support Network International. Founded 2006.

38 groups. A mutual help network of peer-led support groups that reduce the emotional impact of scoliosis by empowering girls living with scoliosis, through mutual support and acceptance to become leaders, making healthy lifestyle choices, and improve their self-esteem. Has an online message forum, as well as regional, national and international meetings. Helps those interested in starting new local chapters. Website: http://www.curvygirlsscoliosis.com National Scoliosis Foundation International. 5 affiliated groups. Founded 1976.

Dedicated to helping children, parents, adults and health care providers deal with the complexities of spinal deformities such as scoliosis. Whether the issue is early detection and screening programs, treatment methods, pain management or patient care, NSF strives to promote public awareness, provide reliable information, encourage on-going research, education and support the scoliosis community. Biannual newsletter, information packets, pen pals, conferences and phone support.

Assistance in starting local groups. Write: National Scoliosis Foundation, 5 Cabot Pl., Stoughton, MA 02072. Call 1-800-673-6922 or 781-341-6333 (Mon.-Fri., 9am-5pm EST); Fax: 781-341-8333. Website: http://www.scoliosis.org E-mail: nsf@scoliosis.org SCHWACHMAN-DIAMOND SYNDROME

NATIONAL | INTERNATIONAL | MODEL Shwachman-Diamond Syndrome Foundation National network. Founded 1994.

Patient advocacy organization whose goals are to support research towards a cure and improve medical management of symptoms. Links families for emotional support 168

and provides them with the most current medical information available which is provided through the knowledge and cooperation of a professional medical advisory board. Write: Shwachman-Diamond Syndrome Foundation, P.O. Box 40, Avon, NY 14414. Call 1-888-825-7373. Website: http://www.shwachman-diamond.org E-mail: info@schwachman-diamond.org SCHIZENCEPHALY

ONLINE | TELEPHONE Schizencephaly Support Group Online. Support group for persons with Schizencephaly, a rare developmental disorder of the brain, their parents, families and healthcare providers. Website: http://groups.yahoo.com/neo/groups/schizkidzbuddies/info and http://schizkidzbuddies.com E-mail: schizkidzbuddies-owner@yahoogroups.com SEPTO OPTIC DYSPLASIA

NATIONAL | INTERNATIONAL | MODEL Septo Optic Dysplasia Division - MAGIC Foundation National network. Founded 1989. Provides public education and networking for families of children with septo optic dysplasia. Information and referrals, phone support, pen pals, annual convention and conferences. Membership is $35 (US); $40 (Canada); $45 (International). Write: Septo Optic Dysplasia Division, c/o The MAGIC Foundation, 6645 W. North Ave., Oak Park, IL 60302. Call 1-800-362-4423; Fax: 708-383-0899. Website: http://www.magicfoundation.org E-mail: mary@magicfoundation.org SEVERE COMBINED IMMUNODEFICIENCY DISEASE

ONLINE | TELEPHONE SCID Email Listserv Support Group Online. Provides support for individuals with Severe Combined Immunodeficiency (SCID), aka “bubble boy disease”, a primary immune deficiency. Website: http://www.scid.net SHORT BOWEL SYNDROME

NATIONAL | INTERNATIONAL | MODEL The Short Gut Syndrome Parents’ Support Group Model. Founded 2010. Peer-run support group created to provide parents and families of children with short gut syndrome (aka Short Bowel Syndrome) with support and resources to help them to become better advocates and caregivers for their children through discussion and education about short gut syndrome, treatments, and therapies. Website includes message boards, newsletter, and help with starting local support groups. Write: 169

SGSPSG, c/o Emily Hoopes, 4213 Barker Rd., Taylorsville, UT 84119. Call 801-9556526. Website: http://shortgutsupport.com E-mail: support@shortgutsupport.com

ONLINE | TELEPHONE ShortBowel Support Online. Providing support by connecting people and helping patients, family members and healthcare professionals learn about short bowel syndrome (SBS). Website: http://www.shortbowelsupport.com SICKLE CELL DISEASE

NATIONAL | INTERNATIONAL | MODEL Sickle Cell Disease Association of America, Inc. National. 60 chapters. Founded 1971. Education for the public and professionals about sickle cell disease. Support and information for persons affected by the disease. Supports research, quarterly newsletter, chapter development guidelines, phone network, videos, online network, research updates and forum. Write: Sickle Cell Disease Association of America, 3700 Koppers St., Suite 570, Baltimore, MD 21227. Call 1-800-421-8453 (Mon.-Fri., 8:30am5pm EST); Fax: 410-528-1495. Website: http://www.sicklecelldisease.org SJOGREN’S SYNDROME

NATIONAL | INTERNATIONAL | MODEL Marinesco Sjogren Syndrome International. Provides information and support to families affected by MSS and to encourage communication between doctors and researchers interested in this disorder. Website provides a listserv, connections with others, information about MSS, as well as links to other useful sites. Website: http://marinesco-sjogren.org E-mail: mss@marinesco-sjogren.org Sjogren’s Syndrome Foundation, Inc. National. 78 groups. Founded 1983.

Information and education for Sjogren’s syndrome patients, families, health professionals and the public. Opportunities for patients to share ways of coping.

Stimulates research for treatments and cures. Newsletter “Moisture Seekers,” audio tapes, annual symposium and Sjogren’s handbook. Write: Sjogren’s Syndrome Foundation, Inc., 6707 Democracy Blvd., Suite 325, Bethesda, MD 20817. Call 1-800475-6473 or 301-530-4420 (Mon.-Fri., 9am-5pm); Fax: 301-530-4415. Website: http://www.sjogrens.org

ONLINE | TELEPHONE Sjogren’s World Online. 826 members. Founded 1999. Caring internet community built for people who have Sjogren’s Syndrome (a chronic, slowly progressive autoimmune disease that affects the exocrine glands) to meet and share experiences, 170

personal knowledge and to disseminate information to improve quality of life.

Discussion forums, instant messaging, live chats and e-mail lists. Website: http://www.sjogrensworld.org SKIN DISORDERS

ONLINE | TELEPHONE SkinCell Forum Online. 16,000 members. Founded 2006. Support and information for persons dealing with any type of skin disorder (palmoplantar pustulosis, psoriasis, eczema, rosacea, etc.) Website: http://www.skincell.org/community SLEEP APNEA

NATIONAL | INTERNATIONAL | MODEL A.W.A.K.E. (American Sleep Apnea Association) Network Groups National. 200+ affiliated groups. Founded 1990. Provides support, education and social interaction for persons with sleep apnea, their families and friends. Assistance and guidelines for starting groups ($150 annual fee). Write: A.W.A.K.E. Network Groups, 1717 Pennsylvania Ave. NW, Suite 1025, Washington, DC 20006. Call 1-888-293-3650.

Website: http://www.sleepapnea.org E-mail: asaa@sleepapnea.org SMITH-LEMI-OPITZ (RSH) SYNDROME

NATIONAL | INTERNATIONAL | MODEL Smith-Lemli-Opitz/RSH Foundation International network. Founded 1988. Support for families, medical professionals and others dealing with individuals that have SmithLemli-Opitz (RSH) syndrome. Research funding also available via a grant process.

Phone, social media (Facebook/Twitter/Yahoo chat group) and e-mail support available. Bi-annual conferences and newsletter. Write: Smith-Lemli-Opitz/RSH Foundation, c/o Gretchen Noah, P.O. Box 10598, Fargo, ND 58106-0598. Call 701367-1976. Website: http://www.smithlemliopitz.org E-mail: gnoah@smithlemliopitz.org SOTOS SYNDROME

NATIONAL | INTERNATIONAL | MODEL Sotos Syndrome Support Association International network. Founded 1984.

Provides information and mutual support for families of children with Sotos syndrome.

Newsletter, phone support, annual conferences, information and referrals. Write: Soto 171

Syndrome Support Association, P.O. Box 4626, Wheaton, IL 60189. Call 1-888-2467772. Website: http://www.sotossyndrome.org E-mail: sssa@sotossyndrome.org SPASMODIC DYSPHONIA

NATIONAL | INTERNATIONAL | MODEL National Spasmodic Dysphonia Association National. 35 affiliated support groups.

Founded 1990. Dedicated to advancing medical research into the causes and treatments for spasmodic dysphonia. Promotes physician and public awareness of the disorder through outreach and sponsoring support activities for people with SD and their families. Educational materials, annual symposiums, support groups, newsletter and on-line resources. Offers assistance in starting similar groups. Membership $40/yr.

Write: National Spasmodic Dysphonia Association, 300 Park Blvd., Suite 335, Itasca, IL 60143. Call 1-800-795-6732. Website: http://www.dysphonia.org E-mail: nsda@dysphonia.org SPASMODIC TORTICOLLIS

NATIONAL | INTERNATIONAL | MODEL National Spasmodic Torticollis Association National. 75 chapters. Founded 1983.

Advocacy group providing information and support to spasmodic torticollis patients and their families. Network of support groups and volunteers on-call to talk with other patients. Quarterly magazine, annual symposium, supports research, e-mail support, educates the public and medical community. Write: National Spasmodic Torticollis Association, 9920 Talbert Ave., Fountain Valley, CA 92708. Call 1-800-487-8385 or 714-378-9837 (Mon.-Fri., 9am-5pm PST); Fax: 714-378-7830. Website: http://www.torticollis.org E-mail: nstamail@aol.com SPASTIC PARAPARESIS | FAMILIAL SPASTIC PARAPLEGIA

NATIONAL | INTERNATIONAL | MODEL Spastic Paraplegia Foundation, Inc. National. Founded 2002. Offers support and information to those affected by primary lateral sclerosis and hereditary spastic paraplegia. Supports research. Offers regional and e-mail support groups, online chat group, newsletter and information. Write: Spastic Paraplegia Foundation, Inc., PO Box 1208, Fortson, GA 31808. Call 1-877-773-4483. Website: http://www.spfoundation.org

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NATIONAL | INTERNATIONAL | MODEL Spina Bifida Association National. Provides support for individuals with, parents/caregivers, friends and health care professionals. Click on ‘FIND SUPPORT’ to locate local chapters and online support groups. Call 1-800-621-3141 or 202-9443285; Fax 202-944-3295. Write: SBA, 4590 MacArthur Blvd. NW, Ste. 250, Washington, DC 20007-4226. Website: http://www.spinabifidaassociation.org Email: sbaa@sbaa.org SPINAL CORD TUMOR

ONLINE | TELEPHONE Spinal Cord Tumor Association Online. Peer-run mutual support community on the web. Provides support via teleconferences with guest speakers, message boards and information. Website: http://www.spinalcordtumor.org E-mail: sctassociation@yahoo.com SPINAL MUSCULAR ATROPHY

NATIONAL | INTERNATIONAL | MODEL Cure SMA (Spinal Muscular Atrophy) (MULTILINGUAL) International. 31 chapters.

Founded 1984. Support and networking for families affected by spinal muscular atrophy types I, II, III, adult onset and Kennedy’s. Educational resources, group development guidelines, bi-annual newsletter, phone support and International CDs. Funds research. Write: Cure SMA, 925 Busse Rd., Elk Grove Village, IL 60007. Call 1800-886-1762 or 847-367-7620 (Mon.-Fri., 7am-3pm CST); Fax: 847-367-7623.

Website: http://www.curesma.com E-mail: info@curesma.org STEVENS JOHNSON SYNSROME

NATIONAL | INTERNATIONAL | MODEL Stevens-Johnson Syndrome Foundation International network. Founded 1995.

Provides to the public and medical communities information on adverse allergic drug reactions. Aim is to quicken diagnoses to avoid permanent damage. Literature, phone support, chatroom, online group, moderated discussion group, information and referrals. Write: Stevens-Johnson Syndrome Foundation, P.O. Box 350333, Westminster, CO 80035. Call 303-635-1241; Fax: 303-648-6686. Website: http://www.sjsupport.org and http://www.sjskidssupport.org E-mail: sjsupport@aol.com STICKLER SYNDROME 173

NATIONAL | INTERNATIONAL | MODEL Stickler Involved People International network. Founded 1995. Network that offers support and education for persons affected by Stickler syndrome. This genetic disorder affects connective tissues, including the joints, eyes, palate and hearing. Phone support, annual conference, literature, DVD, online listserv, quarterly newsletter, information and referrals. Write: Stickler Involved People, 15 Angelina, Augusta, KS 67010. Call 316-259-5194. Website: http://www.sticklers.org E-mail: sip@sticklers.org STRABISMUS (CROSS-EYED)

ONLINE | TELEPHONE Eyes Apart Strabismus Support Online. Support for adults, teens, and parents of children with Strabismus (squint, crossed eyes, lazy, or amblyopia). Website: http://health.groups.yahoo.com/group/eyesapart E-mail: eyesapartowner@yahoogroups.com STROKE

NATIONAL | INTERNATIONAL | MODEL National Stroke Association National. Founded 1984. Dedicated to reducing the incidence and impact of stroke through prevention, medical treatment, rehabilitation, family support and research. Professional publications, “StrokeSmart� magazine, information and referrals to local groups. Guidance for starting stroke clubs and groups. Write: National Stroke Association, 9707 E. Easter Lane, Suite B, Centennial, CO 80112. Call 1-800-787-6537; Fax: 303-649-1328. Website: http://www.stroke.org E-mail: supportgroups@stroke.org American Stroke Association Division of American Heart Association (BILINGUAL) National. 1800 groups. Founded 1979. Maintains a listing of support groups for stroke survivors, their families, friends and interested professionals. Publishes bimonthly magazine. Provides information and referrals to groups and general resources. Write: Stroke Connection, 7272 Greenville Ave., Dallas, TX 75231-4596. Call 1-888-4787653. Website: http://www.strokeassociation.org E-mail: strokeconnection@heart.org

ONLINE | TELEPHONE Stroke Support Network Online. Provides support for stroke survivors and caregivers of adult stroke. Support group is available 24/7/365. Website: http://www.strokenetwork.org 174

Stroke Talk for Young People Online. 400+ members. Founded 2002. Support, information and tips for the younger stroke survivor (stroke or TBI happened before age 55). Families and caregivers welcome. Website: http://health.groups.yahoo.com/group/stroketalkforyoungpeople and https://www.facebook.com/groups/strokeforFBsupport and https://www.facebook.com/groups/unitedstrokeandbraininjury Email: stroketalkforyoungpeople-owner@yahoogroups.com SWALLOWING ISSUES | DYSPHAGIA

NATIONAL | INTERNATIONAL | MODEL National Foundation of Swallowing Disorders National. 7+ groups. Founded 2006.

Support for individuals with dysphagia or are close to someone with a swallowing issue. Links to local support groups on website. Assistance in starting support groups available. Write: NFOSD, PO Box 3725, Carmel, CA 93921. Call 415-326-3673.

Website: http://www.nfosd.com and http://www.swallowingdisorderfoundation.com/swallowing-support-groups Email: info@nfosd.com SYRINGOMYELIA

NATIONAL | INTERNATIONAL | MODEL American Syringomyelia & Chiari Alliance Project International network. Founded 1988. Support, networking and information for people affected by syringomyelia and Chiari malformation, their families and friends. Newsletter, phone support, pen pals and conferences. Also offers online message boards and chatrooms. Write: American Syringomyelia and Chiari Alliance Project, P.O. Box 1586, Longview, TX 75606-1586.

Call 903-236-7079 or 1-800-272-7282; Fax: 903-757-7456. Website: http://www.asap.org TAY-SACHS DISEASE

NATIONAL | INTERNATIONAL | MODEL National Tay-Sachs and Allied Diseases Association (MULTILINGUAL) International. 2 chapters. Founded 1957. Dedicated to the treatment and prevention of Tay-Sachs, Canavan and related genetic diseases. Provides information and support services to individuals of all ages and families affected by these disorders as well as caregivers and the public at large. The strategies for achieving these goals include public and professional education, research, genetic screening, support services, peer support group for parents, grandparents, extended family members and advocacy.

Translations available in Spanish, Russian, Hebrew and French. Write: National Tay175

Sachs and Allied Diseases Association, 2001 Beacon St., Suite 204, Boston, MA 02135. Call 1-800-906-8723 or 617-277-4463; Fax: 617-277-0134. Website: http://www.ntsad.org E-mail: info@ntsad.org TEMPOROMANDIBULAR JOINT DYSFUNCTION (TMJ)

NATIONAL | INTERNATIONAL | MODEL The TMJ Association International. Founded 1986. Provides comprehensive information on temporomandibular (TMJ) disorders, offers patient support, educates healthcare professionals and the public, and advocates for scientific research. Write: The TMJ Association, P.O. Box 26770, Milwaukee, WI 53226-0770. Call 262-4320350; Fax: 262-432-0375. Website: http://www.tmj.org E-mail: info@tmj.org THROMBOPHILIA

ONLINE | TELEPHONE FVLeiden.org Online. Helping persons affected by thrombophilia, a genetic condition which increase the tendency of the blood to clot, by serving as a portal to a wide array of diverse and up-to-date information, education, treatment, research, peer support via FVLeiden Email Forum Discussion Group. Website: http://www.fvleiden.org THYROID

NATIONAL | INTERNATIONAL | MODEL Graves’ Disease and Thyroid Foundation National. 15 affiliated groups. Founded 1990. Aim is to establish patient-based Graves’ disease and thyroid exclusive support groups to provide better treatment and to increase public awareness. Participates in research. Newsletter, information and referrals, phone support, national conferences, internet bulletin board. Guidelines available to assist in starting a similar group. Write: Graves’ Disease and Thyroid Foundation, P.O. Box 2793, Rancho Santa Fe, CA 92067. Call 1-877-643-3123. Website: http://www.gdatf.org E-mail: info@gdatf.org ThyCa: Thyroid Cancer Survivors’ Association, Inc. National. Support, education and communication for people with all types of thyroid cancer, as well as caregivers.

Outreach to the public for thyroid cancer awareness and early detection. Twelve online support groups, local support groups, free online newsletter, free downloadable lowiodine cookbook, free patient information booklet and packet, free regional workshops, free webinars, annual international conference and free thyroid cancer awareness brochures. Thyroid Cancer Awareness Month, funding for research and educational website. Write: ThyCa: Thyroid Cancer Survivors’ Association, Inc., P.O. Box 1545, New York, NY 10159-1545. Call 1-877-588-7904; Fax: 630-604-6078. Website: http://www.thyca.org E-mail: thyca@thyca.org 176

ONLINE | TELEPHONE Hashimoto’s Thyroiditis - Integrative Online. 700+ members. Founded 2003. A place to share information and support for those with Hashimoto’s Thyroiditis. Website: http://health.groups.yahoo.com/group/thyroiditis E-mail: thyroiditisowner@yahoogroups.com TOURETTE SYNDROME

NATIONAL | INTERNATIONAL | MODEL International Tourette Syndrome Association (TSA) International. Founded 1972.

Provides support, education and advocacy for individuals with Tourette Syndrome.

Website also provides news, calendar of events and ways to get involved. Click on ‘USA CHAPTERS’ for support groups and chapters from all over the US and Puerto Rico. Click ‘INTERNATIONAL’ for global resources and support. Call 718-224-2999; Fax: 718-729-9596. Write TSA, 42-40 Bell Blvd., Bayside, NY 11361. Website: http://www.tsa-usa.org TOWNES-BROCKS SYNDROME

ONLINE | TELEPHONE Townes-Brocks Syndrome International On-line Support Network Online.

Founded 2004. Provides support for people affected by Townes-Brocks syndrome, a rare genetic disorder present at birth. Group welcomes all interested in sharing information and support with others affected by this disorder. Website: http://www.good-health-network.com/generaltbs/safflower Yahoo: http://groups.yahoo.com/neo/groups/townes-brocks-syndrome/info TRACHEO ESPPHAGEAL FISTULA

NATIONAL | INTERNATIONAL | MODEL TEF/VATER Support Group International. 6 groups. Founded 1990. Offers support and encouragement for parents of children with tracheoesophageal fistula, esophageal atresia and VATER. Aims to bring current information to parents and the medical community. Newsletter, phone support, information and referrals. Write: TEF/VATER Support Network, c/o Greg and Terri Burke, 15301 Grey Fox Rd., Upper Marlboro, MD 20772. Call 301-952-6837. E-mail: tefvater@gmail.com

ONLINE | TELEPHONE

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EA/TEF Child and Family Support Connection, Inc. Online. Provides information and support for families of children with esophageal atresia and tracheoesophageal fistula. Offers pamphlets, brochures and discussion forum. Website: http://eatef.org TRANSVERSE MYELITIS

NATIONAL | INTERNATIONAL | MODEL Transverse Myelitis Association International network. 10,000+ members.

Supports and advocates for individuals and their families diagnosed with transverse myelitis and other rare neuroimmunological disorders of the central nervous system (e.g. acute disseminated encephalomyelitis, optic neuritis and Neuromyelitis Optica, aka”Davic’s Disease”). Networks families together for support. Provides research literature, newsletter and annual journal. Provides a support forum for communication through social networks and a bulletin board. Assists in the development of local support groups. Conducts an annual summer camp for children 5-17 years of age with ADEM, NMO, ON and TM and their families. Fundraising for research and clinical and research fellowships. Conducts symposia and workshops. Write: Transverse Myelitis Association, 1787 Sutter Parkway, Powell, OH 43065-8806. Call 1-855-380-3330 or 614-766-1806 (EST). Website: http://www.myelitis.org E-mail: info@myelitis.org TRICHORHINOPHALANGEAL SYNDROME

NATIONAL | INTERNATIONAL | MODEL Trichorhinophalangeal Syndrome Association (TRPSA) International. Founded 2003. An international support network for parents of children and people with Trichorhinophalangeal syndrome, a skeletal disorder, via their online support group, a member’s only moderated group. Call 651-450-0788. Write: TRPSA, 6585 Dawn Way East, Inver Grove Heights, MN 55076. Website: http://trpsa.org E-mail: trpsa@comcast.net TRIGEMINAL NEURALGIA | TIC DOULOUREUX

NATIONAL | INTERNATIONAL | MODEL Trigeminal Neuralgia Association National. 65+ groups. Founded 1990. Provides information, mutual support and encouragement to persons with trigeminal neuralgia and related facial pain disorders. Families are welcome. Helps to reduce the isolation of those affected. Aims to increase awareness and promotes. Quarterly newsletter, phone support, educational information and patient advocacy. Write: Trigeminal Neuralgia Association, 408 W. University Ave., Suite 602, Gainesville, FL 32601. Call 1-800-923-3608 or 352-384-3600; Fax 352-384-3606. Website: http://www.tnasupport.org 178

ONLINE | TELEPHONE Trigeminal Neuralgia (TN) - Online Support Group Online. Provides support, information and friendship for individuals with Trigeminal Neuralgia, friends and family.

Website: http://www.livingwithtn.org E-mail: info@bensfriends.org TRIMETHYLAMINURA

ONLINE | TELEPHONE Trimethylamanuria Information Online. 875+ members. Moderated group which provides support for individuals with Trimethylaminuria (TMAU), a metabolic disorder where the body lacks enough enzyme to breakdown (aka Fish Odor Syndrome).

Website: http://groups.yahoo.com/neo/groups/trimethylaminuria/info TRISOMY

NATIONAL | INTERNATIONAL | MODEL SOFT (Support Organization For Trisomy) National. 50 chapters. Founded 1979.

Support and education for families of children with trisomy 18, trisomy 13 and related genetic disorders (including trisomy 9). Education for professionals. Quarterly newsletter, pen pal program, phone network, regional gatherings, annual international conference and booklets. Online information on finding a local support group. Write: SOFT, c/o 2982 S. Union St., Rochester, NY 14624. Call 585-594-4621 or 1-800-7167638 (for families); Fax: 585-594-1957. Website: http://www.trisomy.org E-mail: barbsoft@rochester.rr.com

Trisomy 12p Parent Support Network International. Provides information, assistance and support to families of individuals with trisomies of the short arm (p) of chromosome 12. Website: https://www.facebook.com/pages/Trisomy-12p-parentsupport/28105874128 3

ONLINE | TELEPHONE Trisomy 18 Foundation Online. Support for parents and families of a child diagnosed with Trisomy 18. Message board and chatroom. Website: http://www.trisomy18support.org E-mail: t18info@trisomy18.org TUBE FEEDING

NATIONAL | INTERNATIONAL | MODEL Oley Foundation, Inc. National. 55 affiliated groups. Founded 1983. Provides information and psychosocial support and networking opportunities for home nutrition 179

support (intravenous or tube-feeding) patients, their families, caregivers and professionals. Programs include bi-monthly newsletter, national network of volunteers providing patient support, annual summer conference, regional meetings, patient-topatient networking and information clearinghouse, online learning programs, etc. Write: Oley Foundation, c/o Albany Medical Center, 43 New Scotland Ave., MC-28, Albany, NY 12208. Call 1-800-776-6539 (day) or 518-262-5079; Fax: 518-262-5528. Website: http://www.oley.org E-mail: bishopj@mail.amc.edu TUBEROUS SCLEROSIS

NATIONAL | INTERNATIONAL | MODEL Tuberous Sclerosis Alliance National. Founded 1974. Dedicated to finding a cure for tuberous sclerosis while improving the lives of those affected. Provides research, support and education among individuals, families and the helping professionals.

Newsletter, peer networking programs, conferences and information. Write: Tuberous Sclerosis Alliance, 801 Roeder Rd., Suite 750, Silver Spring, MD 20910-4467. Call 301-562-9890 or 1-800-225-6872; Fax: 301-562-9870. Website: http://www.tsalliance.org TWIN TO TWIN TRANSFUSION SYNDROME

NATIONAL | INTERNATIONAL | MODEL Twin to Twin Transfusion Syndrome Foundation (MULTILINGUAL) International.

12 national coordinators. Founded 1989. Dedicated to providing immediate and lifesaving educational, emotional and financial support for families, medical professionals and caregivers before, during and after pregnancy with twin to twin transfusion syndrome. Dedicated to saving the babies, improving their future health and care, furthering medical research, providing neonatal intensive care, special needs and bereavement support. Newsletter, literature, phone support, visitation and conferences. Message boards and private group on Facebook for diagnosed, loss of one, loss of both, special needs and NICU support. Guidelines for professionals on multiple birth loss during pregnancy. International registry. Website in many languages.

Write: TTTS, 411 Longbeach Parkway, Bay Village, OH 44140. Call 1-800-815-9211.

Website: http://www.tttsfoundation.org and http://www.facebook.com/groups/tttsfoundation E-mail: info@tttsfoundation.org UNDIAGNOSED ILLNESS

NATIONAL | INTERNATIONAL | MODEL Hearts and Hands Model. 1 group in NC. Founded 1993. Emotional, spiritual and educational support for persons with either rare or undiagnosed illnesses and their families. Special interest in loin pain hematuria syndrome. Write: Hearts and Hands, 180

c/o Winoka Plummer, 1648 Oliver’s Crossing Circle, Winston-Salem, NC 27127. Call 336-785-7612.

Syndromes Without A Name (SWAN) USA National. Founded 2004. Mutual support network and information for parents of children with an undiagnosed or unnamed condition. Newsletter and E-list discussion group for parents to share information and provide each other with support. Write: Syndromes Without A Name, 1745 Lorna Lane, Otsego, MI 49078. Call 1-888-880-7926 or 269-692-2090. Website: http://www.undiagnosed-usa.org E-mail: amyclugston@undiagnosed-usa.org UREA CYCLE DISORDERS

NATIONAL | INTERNATIONAL | MODEL National Urea Cycle Disorders Foundation National network. Founded 1989. Links families, friends and professionals who are dedicated to the identification, treatment and cure of urea cycle disorders, which are genetic disorders causing an enzyme deficiency in the urea cycle. Supports research, educates medical professionals, affected patients and families and the public. Provides information, referrals and networks families together for support. Phone and online support, literature and newsletter. Write: National Urea Cycle Disorders Foundation, 75 South Grand Ave., Pasadena, CA 91105. Call 626-578-0833; Fax: 626-578-0823. Website: http://www.nucdf.org E-mail cureucd@nucdf.org

ONLINE | TELEPHONE MdDS Friends Online. A moderated online support group for individuals with Mal de Debarquement Syndrome, a vestibular disorder, meaning literally “disembarking sickness” because the effect gives the illusion of movement of dry land. Website: https://www.facebook.com.groups/124894594239599 TRUE Kids (Transplanted to Resolve Ure-cycle Enzyme-deficiency) Online.

Mutual support and information for families of transplanted children with urea cycle disorder. Website: http://www.true-kids.org VALLEY FEVER

ONLINE | TELEPHONE Valley Fever Survivor Support Groups Online. Support for people with Valley Fever.

Promotes information that will ensure public awareness for this disease. Website: http://www.valleyfeversurvivor.com/support.html E-mail: voiceforaction@valleyfeversurvivor.com

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VASCULAR ANOMALIES

NATIONAL | INTERNATIONAL | MODEL Vasculitis Foundation International. 30+ groups. Founded in 1995. Provides support for a variety of vascular disorders including Behcet’s disease, Buerger’s disease, Cryogiobulinemia, Henock-Schonlein Purpura, Kawasaki disease, Wegener’s disease and other vascular anomalies. Publishes newsletter, literature, provides advocacy.

Write: Vasculitis Foundation, PO Box 28660, Kansas City, MO 64188. Call 1-800-2279474 or 816-436-8211. Website: http://www.vasculitisfoundation.org/support VASCULAR BIRTHMARKS

NATIONAL | INTERNATIONAL | MODEL Klippel Trenaunay (KT) Support Group National. Founded 1986. Provides support and education for individuals with Klippel Trenaunay, a combined vascular malformation, and their families. Write: K-T Support, 1471 Greystone Lane, Milford, OH 45150. Website: http://k-t.org The Sturge-Weber Foundation International network. Members in 50 states and internationally. Founded 1987. Mutual support network for families and professionals involved with Sturge-Weber syndrome, Port Wine birthmarks or Klippel Trenaunay syndrome. Disseminates information, funds and facilitates research. Newsletter, enews monthly, phone support, bi-annual conference, pen pals and active e-mail support group. Educational materials for schools, parents and clinicians. Write: SturgeWeber Foundation, P.O. Box 418, Mt. Freedom, NJ 07970-0418. Call 973-895-4445 or 1-800-627-5482; Fax: 973-895-4846. Website: http://www.sturge-weber.org Email: ahoward@sturge-weber.org Vascular Birthmark Foundation National. Provides support via discussion boards click on ‘FORUMS’; click on RESOURCES>Support Groups> Groups & Foundations.

Also has downloadable resources, information and links to other resources. Write: VBF, PO Box 106, Latham, NY 12110. Call 1-877-823-4646. Website: http://www.birthmark.org

ONLINE | TELEPHONE AVM Survivors Online. Provides support, information and network for individuals with Arteriovenous Malformation. Website: http://www.avmsurvivors.org E-mail: info@bensfriends.org VELO-CARDIO-FACIAL SYNDROME

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NATIONAL | INTERNATIONAL | MODEL Velo-Cardio-Facial Syndrome Educational Foundation, Inc. International network.

75 groups. Founded 1996. Support and resource network for families coping with velocardio-facial syndrome (aka Shprintzen syndrome, 22q11 deletion syndrome, 22q11.2 deletion syndrome and DiGeorge syndrome). Provides family programs, online support, parent-to-parent networking, help in starting local face-to-face groups, educational materials, newsletter and annual conference. Write: Velo-Cardio-Facial Syndrome Educational Foundation, Inc., P.O. Box 12591, Dallas, TX 75225. Call 855800-8237. Website: http://www.vcfsef.org E-mail: info@vcfsef.org VENTILATOR USERS

NATIONAL | INTERNATIONAL | MODEL International Ventilator Users Network International network. Founded 1987.

Information sharing between ventilator users and health care professionals experienced in home mechanical ventilation. Annual directory ($15). Bi-monthly newsletter and IVUN Membership Memo in alternate months (free with membership dues of $30). Write: International Ventilator Users Network, 4207 Lindell Blvd., Suite 110, St. Louis, MO 63108-2030. Call 314-534-0475; Fax: 314-534-5070. Website: http://www.ventusers.org E-mail: info@ventusers.org VESTIBULAR DISORDERS

NATIONAL | INTERNATIONAL | MODEL Vestibular Disorders Association International. Founded 1983. Information, referrals and support for people affected by disorders caused by inner ear problems.

Support network, public education, group development assistance, quarterly newsletter and library of resources. Publishes free documents, and sells full-length books on Meniere’s disease and benign paroxysmal positional vertigo (BPPV). Write: Vestibular Disorders Association, 5018 NE 15th Ave., Portland, OR 97211. Call 1-800-837-8428 or 503-229-7705; Fax: 503-229-8064. Website: http://www.vestibular.org E-mail: info@vestibular.org

ONLINE | TELEPHONE Living Dizzy Online. Support for individuals with vestibular and balance disorders such as vertigo, Meniere’s Disease and other conditions with a view toward being informed. Website: http://groups.yahoo.com/neo/groups/livingdizzy/info E-mail livingdizzy-owner@yahoogroups.com

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VITILIGO

NATIONAL | INTERNATIONAL | MODEL Vitiligo Support International, Inc. International. Founded 2000. 18 Groups.

Support, information and educational resources for vitiligo patients, their families, and health professionals. Free quarterly newsletters to registered members include medically reviewed articles on current vitiligo news, “What’s On Your Mind” column answering patient questions, latest research, and clinical trial recruitment announcements. Website includes support group meeting announcements, active message board for all ages, physician locator and vitiligo product listing and library.

Write: Vitiligo Support International Inc. P.O. Box 3565, Lynchburg, VA 24503. Call 434-326-5380. Website: http://www.vitiligosupport.org VON HIPPEL LINDAU SYNDROME

NATIONAL | INTERNATIONAL | MODEL VHL Alliance (Von Hippel-Lindau Syndrome) (MULTILINGUAL) International network. 35 US chapters; 18 foreign affiliates. Founded 1993. Opportunity for families affected by Von Hippel Hippel Lindau to share their knowledge and experiences with each other and the medical community. With patients at the focus of organization, the VHL Alliance is dedicated to research, education, and support to improve diagnosis, treatment, and quality of life for those affected by VHL. Newsletter, phone and online support, education, tissue bank and handbook. Literature available in Spanish, German, French, Japanese, Dutch and other languages. Funds research. Assistance in starting local chapters. Write: VHL Alliance, 2001 Beacon St., Suite 208, Boston, MA 02135-7787. Call 1-800-767-4845 or 617-277-5667; Fax: 858-712-8712. Website: http://www.vhl.org VULVAR DISORDERS

NATIONAL | INTERNATIONAL | MODEL National Vulvodynia Association, Inc. National. 100 affiliated groups. Founded 1994. Provides information and support to women with vulvodynia. Educates health care professionals and the public about this condition. Newsletter, literature, phone support, advocacy, information and referrals. Write: National Vulvodynia Association, P.O. Box 4491, Silver Spring, MD 20914-4491. Call 301-299-0775; Fax: 301-2993999. Website: http://www.nva.org E-mail: chris@nva.org WAGR SYNDROME 184

NATIONAL | INTERNATIONAL | MODEL International WAGR/11p Deletion Syndrome Association International network.

Founded 2000. Provides information, encourages research and support to persons with WAGR/11p Deletion syndrome or aniridia, their families, physicians and teachers.

Literature, free bi-annual newsletter, networking, phone support, information and referrals. E-mail support group. Write: International WAGR Syndrome Association, PO Box 769, Hanover, PA 17331. Call 313-381-4302. Website: http://www.wagr.org Email: reachingout@wagr.org WALDENSTROM’S MACROGLOBULINEMIA

NATIONAL | INTERNATIONAL | MODEL International Waldenstrom’s Macroglobulinemia Foundation (MULTILINGUAL) International. 50 affiliated groups. Founded 1998. Provides support and information to persons with Waldenstrom macroglobulinemia, their families and caregivers.

Information and referrals, phone support, educational programs, newsletter and literature (some literature available in French and Spanish). Regular support group meetings. Provides assistance in starting new groups. Write: International Waldenstrom’s Macroglobulinemia Foundation, 6144 Clark Center Avenue, Sarasota, FL 34238. Call 941-927-4963; Fax: 941-927-4467. Website: http://www.iwmf.com Email: info@iwmf.com WEGENER’S GRANULOMATOSIS

NATIONAL | INTERNATIONAL | MODEL Vasculitis Foundation National. 65 groups. Founded 1986. Emotional support and information for patients with vasculitis. Educates families, friends and general public about the devastating effects of vasculitis, it’s symptoms and treatment. Dues $35/yr.

Bimonthly newsletter included with dues. Write: Vasculitis Foundation, P.O. Box 28660, Kansas City, MO 64188-8660. Call 1-800-277-9474 (Mon.-Fri., 8:30am-5pm CST); Fax: 816-436-8211. Website: http://www.vasculitisfoundation.org E-mail: vf@vasculitisfoundation.org WILLIS-EKBOM DISEASE

NATIONAL | INTERNATIONAL | MODEL Willis-Ekbom Disease Foundation National network. Founded 1992. Promotes awareness, offers a network of support and educational groups and distributes information on Willis-Ekbom disease (also known as restless legs syndrome).

Publishes free information brochures. Members receive a quarterly newsletter. Write: RLS Foundation, 1530 Greenview Dr. SW, Suite 210, Rochester, MN 55902. Call 507185

287-6465; Fax: 507-287-6312. Website: http://www.willis-ekbom.org E-mail: info@willis-ekbom.org WILSON’S DISEASE

NATIONAL | INTERNATIONAL | MODEL Wilson’s Disease Association International network. Founded 1979. Provides information and referrals about Wilson’s disease, a genetic disorder that causes excessive amounts of copper accumulation in the body, affecting the liver and brain.

Provides mutual support and aid for those affected by the disease and their families.

Promotes research into treatment and cure. Quarterly newsletter. Provides phone support network. Offers e-mail group. Write: Wilson’s Disease Association, 5572 North Diversey Blvd., Milwaukee, WI 53217. Call 1-866-961-0533 or 414-961-0533. Website: http://www.wilsonsdisease.org E-mail: info@wilsonsdisease.org

WILLIAMS SYNDROME

NATIONAL | INTERNATIONAL | MODEL Williams Syndrome Association National network. 18 chapters. Founded 1982.

Purpose is to encourage research related to Williams syndrome, find and support families with Williams syndrome and share information among parents and professionals regarding educational, medical and behavioral experiences. Newsletter.

Write: Williams Syndrome Association, 570 Kirts Blvd., Suite 223, Troy, MI 48084. Call 1-800-806-1871 or 248-244-2229; Fax 248-244-2230. Website: http://www.williamssyndrome.org E-mail: info@williams-syndrome.org WORSTER-DROUGHT

NATIONAL | INTERNATIONAL | MODEL Worster-Drought Syndrome Support Group Model. Provides support and information for families of children with Worster-Drought, a form of cerebral palsy.

Offers phone support in the United Kingdom. Pen pals, networking of families, literature and newsletter. Write: Worster-Drought Syndrome, c/o Contact a Family, 209-211 City Road, London EC1V 1JN, UK. Call 020 7383 3555; Fax: 020 7383 0259.

Website: http://www.wdssg.org.uk XERPDERMA PIGMENTOSUM

NATIONAL | INTERNATIONAL | MODEL 186

Xeroderma Pigmentosum Society International network. Founded 1995. Provides sharing of support, information and coping skills for families affected by xeroderma pigmentosum. Annual newsletter. Promotes research into finding a cure. Information and referrals, phone support, conferences, literature, advocacy in community, education and protection. Camp Sundown for patients of all ages and their families.

Write: XP Society, 437 Snydertown Rd., Craryville, NY 12521. Call 518-851-3466.

Website: http://www.xps.org

MENTAL HEALTH

ANXIETY ATTACKS | PHOBIAS | AGORAPHOBIA

NATIONAL | INTERNATIONAL | MODEL Agoraphobics In Motion (AIM) National. 5 groups. Founded 1983. Support group that uses specific behavioral and cognitive techniques, along with an adapted 12-Steps of AA to help people recover from anxiety disorders. Relaxation techniques, small group discussions and field trips. Group development guidelines ($2.50). Informative facilitator’s manual ($15). Subscription available for weekly handouts ($30/yr). Write: AIM, PO Box 725363, Berkley, MI 48072. Call 248-547-0400. Website: http://www.aimforrecovery.com E-mail: anny@ameritech.net Anxiety and Depression Association of America National network. Founded 1980.

Listing of state-by-state local support groups, brochures, information about anxiety disorders, local listing of healthcare professionals providing treatment for anxiety disorders and a national listing of clinical trials provided free. Promotes the prevention, treatment and cure of anxiety and stress-related disorders through advocacy, education, training, and research. Write: Anxiety and Depression Association of America, 8701 Georgia Ave., Suite 412, Silver Spring, MD 20910. Call 240-485-1001; Fax: 240-485-1035. Website: http://www.adaa.org Death Cafe International. 403 groups. Founded 2011. Provides peer lead mutual support for individuals with a fear of death and dying. The objective is ‘to increase awareness of death with a view to helping people make the most of their (finite) lives’.

Groups have no intention of leading people to any conclusion, product or course of action, meet in an accessible, respectful and confidential space and on a not for profit basis, alongside refreshing drinks and nourishing food - and cake! Website provides 187

“how-to(s)� in starting local Death Cafe support groups. Contact via website. Website: http://www.deathcafe.com; Facebook: https://www.facebook.com/deathcafe; Twitter: https://twitter.com/DeathCafe Emotions Anonymous International. 784 chapters. Founded 1971. Fellowship for people experiencing emotional difficulties. Uses the 12-step program sharing experiences, strengths and hopes in order to improve emotional health. Books and literature available to new and existing groups. Guidelines available to help start a similar group. Write: Emotions Anonymous International, P.O. Box 4245, St. Paul, MN 55104-0245. Call 651-647-9712; Fax: 651-647-1593. Website: http://www.emotionsanonymous.org E-mail: orders@emotionsanonymous.org

GROW in America International. 143 groups. Founded in 1957. 12-Step. Group offers mutual help, friendship, community, education and leadership. Focuses on recovery and personal growth. Open to all including those with mental health issues, depression, anxiety, grief, fears, etc. Write: GROW in America, P.O. Box 3667, Champaign, IL 61826. Call 1-888-741-4769. Website: http://www.growinamerica.org Recovery International International. 600 groups. Founded 1937. Mental health selfhelp organization that offers weekly peer-led meetings for people suffering from various emotional and mental conditions. Telephone and internet-based meetings also available. Principles parallel those found in cognitive-behavioral therapy. Teaches people how to change their thoughts, reactions and behaviors that cause their physical and emotional symptoms. Write: Recovery International, 105 W. Adams St., Suite 2940, Chicago, IL 60603. Call 1-866-221-0302 or 312-337-5661 (Mon.-Fri., 9am-5pm CST); Fax: 312-726-4446. Website: http://www.lowselfhelpsystems.org Selective Mutism Group International. 8 affiliated groups. Founded 1995. Support, information and networking for parents of children with selective mutism. Also open to teachers, therapists, or anyone interested in learning more about this childhood anxiety disorder. Offers newsletter, assistance in starting groups, supports research. Website: http://www.selectivemutism.org

ONLINE | TELEPHONE Anxiety Social Net Online. Provides online support via a social media site for individuals who are struggling with anxiety and/or depression. Website: http://www.anxietysocialnet.com Dental Fear Central Online. Founded 2004. Support for anyone with an extreme phobia of dentists or specific dental fears. Website: http://www.dentalfearcentral.org

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International Emetophobia Society Online. Support for people who suffer from emetophobia (an irrational fear of vomiting) to help them with their fears and share experiences and coping skills. Forums and chat rooms (both private and open).

Website: http://www.emetophonia.org Panic Survivor Online. Support group for persons who suffer from anxiety, panic attacks, social anxiety, generalized anxiety, post-traumatic stress disorder, obsessivecompulsive disorder, hypochondria or any other form of anxiety. Focus is on recovery and day-to-day survival with a “can do� attitude. Website: http://panicsurvivor.com Social Anxiety Anonymous Telephone. Conference call support group for individuals with social anxiety. Meets Sun. and Wed., 9pm; Sat., 1pm (EST). Call 218-895-3918 and, when prompted, enter pin 1234 followed by the pound sign (#).

Social Anxiety Disorder and Social Phobia Support Online. Support for those who suffer with social anxiety and social phobia. Website: http://www.socialanxietysupport.com Taking Flight - Fear of Flying Support Online. Founded 2007. Created by and for fearful fliers who are working on their own recovery. Supportive forum for persons who wish to overcome, or better deal with, their fear of flying. Provides resources and tips to deal with fears. Website: http://www.takingflight.us DEPRESSION | BIPOLAR DISORDER | POST-PARTUM DEPRESSION

NATIONAL | INTERNATIONAL | MODEL Anxiety and Depression Association of America National network. Founded 1980.

Listing of state-by-state local support groups, brochures, information about anxiety disorders, local listing of healthcare professionals providing treatment for anxiety disorders and a national listing of clinical trials provided free. Promotes the prevention, treatment and cure of anxiety and stress-related disorders through advocacy, education, training, and research. Write: Anxiety and Depression Association of America, 8701 Georgia Ave., Suite 412, Silver Spring, MD 20910. Call 240-485-1001; Fax: 240-485-1035. Website: http://www.adaa.org DBSA (Depression and Bipolar Support Alliance) National. 300+ affiliated groups.

Founded 1986. Mutual support and information for persons with depression and bipolar disorder and their families. Provides education on the nature of depressive illnesses. Advocacy for research and improved access to care. Scheduled online support group meetings (Mon., Tues. and Wed.), annual conference, guidelines for developing support groups and quarterly newsletter. Face-to-face support group listings on website. Write: DBSA, 730 North Franklin St., Suite 501, Chicago, IL 60610.

Call 1-800-826-3632 (Mon.-Fri., 8:30am-5pm CST); Fax: 312-642-7243. Website: http://www.dbsalliance.org 189

Depressed Anonymous International. 50 affiliated groups. Founded 1985. 12-Step.

Program to help depressed persons believe and hope they can feel better. Newsletter, phone support, workshops, conferences, seminars, information and referrals.

Information packet and assistance starting a similar group available. Write: Depressed Anonymous, Box 17414, Louisville, KY 40217. Call Hugh 502-569-1989. Website: http://www.depressedanon.com Emotions Anonymous International. 784 chapters. Founded 1971. Fellowship for people experiencing emotional difficulties. Uses the 12-step program sharing experiences, strengths and hopes in order to improve emotional health. Books and literature available to new and existing groups. Guidelines available to help start a similar group. Write: Emotions Anonymous International, P.O. Box 4245, St. Paul, MN 55104-0245. Call 651-647-9712; Fax: 651-647-1593. Website: http://www.emotionsanonymous.org E-mail: orders@emotionsanonymous.org

GROW in America International. 143 groups. Founded in 1957. 12-Step. Group offers mutual help, friendship, community, education and leadership. Focuses on recovery and personal growth. Open to all including those with mental health issues, depression, anxiety, grief, fears, etc. Write: GROW in America, P.O. Box 3667, Champaign, IL 61826. Call 1-888-741-4769. Website: http://www.growinamerica.org Postpartum Support International (BILINGUAL) International. 600+ members; support networks in 48 states and 25 countries. Founded 1987. Goal is to increase the awareness of the emotional changes women often experience during pregnancy and after the birth of a baby. Information on diagnosis and treatment of postpartum depression. Provides education, advocacy and annual conference. Encourages formation of support groups. Helps strengthen existing groups. Phone support, referrals, literature and newsletter. Write: Postpartum Support International, 6706 SW 54th Ave., Portland, OR 97219. Call 1-800-944-4773; Fax: 503-894-9452. Website: http://www.postpartum.net E-mail: psioffice@postpartum.net Recovery International International. 600 groups. Founded 1937. Mental health selfhelp organization that offers weekly peer-led meetings for people suffering from various emotional and mental conditions. Telephone and internet-based meetings available. Principles parallel those found in cognitive-behavioral therapy. Teaches people how to change their thoughts, reactions and behaviors that cause their physical and emotional symptoms. Write: Recovery International, 105 W. Adams St., Suite 2940, Chicago, IL 60603. Call 1-866-221-0302 or 312-337-5661 (Mon.-Fri., 9am-5pm CST); Fax: 312-726-4446. Website: http://www.recoveryinternational.org

ONLINE | TELEPHONE 190

Anxiety Social Net Online. Provides online support via a social media site for individuals who are struggling with anxiety and/or depression. Website: http://www.anxietysocialnet.com Conduct Disorders Parent Message Board Online. 7080 members. Founded 1995.

Support for parents of a child with one of the many behavior disorders such as attention deficit hyperactivity disorder, oppositional defiance disorder, bipolar disorder, conduct disorder, depression, anxiety and substance abuse. Parents of children all ages welcome. Website: http://www.conductdisorders.com Online PPMD Support Group Online. A community of women who are affected by postpartum mood disorders. Website: http://www.ppdsupportpage.com EATING DISORDERS

ONLINE | TELEPHONE National Organization for Males with Eating Disorders (NAMED) Online. Seeks to provide mutual support to males with eating disorders primarily by providing 3 separate online mutual support groups or forums: Men with Eating Disorders Support Group (age 18+); Boys with Eating Disorders Support Group (under age 18) and the Concerned Others Support Group. NAMED also seeks to educate the public on the issue and to serve as a resource for information on the subject. If needed, call 1-877780-0080, to educate the public on the issue and to be a resource of information on the subject. Website: http://www.namedinc.org E-mail: chris@namedinc.org O-Anon Telephone. 12-step. Fellowship for families and friends of people with eating disorders: bulimia, compulsive overeating and anorexia. Sharing experiences, strengths and hopes with one another while dealing with feelings such as despair felt as loved ones self-destruct. Literature available upon request via mail. Meets Sun., 7pm (EST). Conference call number 712-432-0900. After the prompts, enter the access code 637445 followed by the # sign. Write: PO Box 34642, San Antonio, TX, 78265.

Something Fishy - Eating Disorders Online. Support for parents, partners, siblings, family members, co-workers and friends with eating disorders such as anorexia, bulimia, overeating and binge-eating. Website: http://www.something-fishy.org (Click on “Online Support� on your left) FAMILIES OF PERSONS WITH MENTAL ILLNESS

NATIONAL | INTERNATIONAL | MODEL The Balanced Mind Foundation National. Offers a variety of online and face-to-face support groups for families of persons with mental illness in a supportive, informative environment. Provides resources, education, library, newsletters, blogs, forums, family 191

helpline, webinars and more. But, due to a lack of funding, there is a $5.00 membership donation per month before a parent can participate in the online groups 24/7. Write: The Balanced Mind Foundation, 730 North Franklin St., Suite 501, Chicago, IL 60654-7225. Call 847-492-8510. Website: http://thebalancedmind.org/connect/support-groups E-mail: info@thebalancedmind.org (general information) or support@thebalancedmind.org (support groups).

B.I.L.Y. (Because I Love You: The Parent and Youth Support Groups) National.

47 affiliated groups. Founded 1982. Support groups for parents who have children of all ages with behavioral problems such as truancy, substance abuse or other forms of defiance of authority. Focus is on parents getting back their self-esteem and control of their home. Write: B.I.L.Y., P.O. Box 2062, Winnetka, CA 91396-2062. Call 818-8848242. Website: http://www.becauseiloveyou.org E-mail: bily1982@aol.com NAMI (National Alliance on Mental Illness) (BILINGUAL) National. 1100 groups.

Founded 1979. Dedicated to improving the lives of persons living with serious mental illness and their families. Has local self-help and educational groups for family members and mental health consumers. Online community message boards, enewsletters, blogs and online fact sheets. Quarterly magazines. Focuses on support, education, advocacy and research. Provides online veterans resource center. Write: NAMI, 3803 North Fairfax Dr., Suite 100, Arlington, VA 22203-1701. Call 1-800-9506264 (helpline) or 703-524-7600 (day); Fax: 703-524-9094. Website: http://www.nami.org Schizophrenia Society of Canada (ENGLISH and FRENCH) National. 110 societies. Founded 1979. Information, support and advocacy for families and friends of persons with schizophrenia. Public awareness campaigns, advocacy and fund-raising.

Newsletters. Guidelines and assistance for starting self-help groups. Information and referrals, phone help, conferences, brochures, handbooks and videos. Write: Schizophrenia Society of Canada, 100-4 Fort Street, Winnipeg, MB R3C1C4, Canada.

Call 204-786-1616; Fax: 204-783-4898. Website: http://www.schizophrenia.ca Email: info@schizophrenia.ca Selective Mutism Group International. 8 affiliated groups. Founded 1995. Support, information and networking for parents of children with selective mutism. Also open to teachers, therapists, or anyone interested in learning more about this childhood anxiety disorder. Offers newsletter, assistance in starting groups, supports research. Website: http://www.selectivemutism.org

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Sibling Support Project National. 400 affiliated groups. Founded 1990. Organization dedicated to the life-long concerns of brothers and sisters of people with special health, developmental and mental health concerns. Provides workshops on sibling issues, hosts listservs and provides training on how to implement Sibshops (lively workshops for school-age siblings). Write: Sibling Support Project, c/o Donald Meyer, 6512 23rd Ave. NW, Seattle, WA 98117. Call 206-297-6368. Website: http://www.siblingsupport.org E-mail: donmeyer@siblingsupport.org

ONLINE | TELEPHONE Conduct Disorders Parent Message Board Online. 7080 members. Founded 1995.

Support for parents of a child with one of the many behavior disorders such as attention deficit hyperactivity disorder, oppositional defiance disorder, bipolar disorder, conduct disorder, depression, anxiety and substance abuse. Parents of children all ages welcome. Website: http://www.conductdisorders.com SibNet Online. 1500+ members. Founded 1998. Provides support for and about adult brothers and sisters of people with special health, developmental and emotional needs. Opportunity for adult brothers and sisters to share information and discuss issues of common interest. Subscribers can connect with their peers, seek information about local services, create connections for their siblings and discuss the proper policies agencies should have toward brothers and sisters. Website: http://groups.yahoo.com/group/sibnet E-mail: sibnet-owner@yahoogroups.com GENERAL MENTAL HEALTH

NATIONAL | INTERNATIONAL | MODEL C.A.I.R. (Changing Attitudes In Recovery) Model. 30 groups. Founded 1990. Selfhelp “family� sharing a common commitment to gain healthy esteem. Includes persons with relationship problems, addictions, mental illness, etc. Offers new techniques and tools that lead to better self-esteem. Assistance in starting groups. Handbook ($12.95) and CDs available. Write: CAIR, c/o Psychological Associates Press, 706 13 th St., Modesto, CA 95354. Call 209-577-1667; Fax: 209-577-3805. Website: http://www.cairforyou.com Emotions Anonymous International. 784 chapters. Founded 1971. Fellowship for people experiencing emotional difficulties. Uses the 12-step program sharing experiences, strengths and hopes in order to improve emotional health. Books and literature available to new and existing groups. Guidelines available to help start a similar group. Write: Emotions Anonymous International, P.O. Box 4245, St. Paul, MN 55104-0245. Call 651-647-9712; Fax: 651-647-1593. Website: http://www.emotionsanonymous.org E-mail: orders@emotionsanonymous.org 193

GROW in America International. 143 groups. Founded in 1957. 12-Step. Group offers mutual help, friendship, community, education and leadership. Focuses on recovery and personal growth. Open to all including those with mental health issues, depression, anxiety, grief, fears, etc. Write: GROW in America, P.O. Box 3667, Champaign, IL 61826. Call 1-888-741-4769. Website: http://www.growinamerica.org The Icarus Project International. (Sponsored by the JFC) 10+ groups. Provides support for individuals living with and/or affected by experiences that are often diagnosed and labeled as psychiatric conditions. By joining together as individuals and as a community, the intertwined threads of madness, creativity, and collaboration can inspire hope and transformation. Website has forum / message board, resources, and links to face-to-face support groups. Write: The Icarus Project, c/o FJC, 520 8th Avenue, 20th Floor, New York, NY 10018. Website: http://www.theicarusproject.net E-mail: nycicarus@gmail.com

Rageaholics Anonymous National. 12-step. Support for individuals who see to keep their compulsive and destructive anger under control. Downloadable information to assist with starting local chapters. Website: http://www.rageaholicsanonymous.org E-mail: info@rageaholicsanonymous.org

Recovery International International. 600 groups. Founded 1937. Mental health selfhelp organization that offers weekly peer-led meetings for people suffering from various emotional and mental conditions. Telephone and internet-based meetings also available. Principles parallel those found in cognitive-behavioral therapy. Teaches people how to change their thoughts, reactions and behaviors that cause their physical and emotional symptoms. Write: Recovery International, 105 W. Adams St., Suite 2940, Chicago, IL 60603. Call 1-866-221-0302 or 312-337-5661 (Mon.-Fri., 9am-5pm CST); Fax: 312-726-4446. Website: http://www.recoveryinternational.org

ONLINE | TELEPHONE The Icarus Project (Sponsored by the JFC) Online. Support for individuals living with and/or affected by experiences that are often diagnosed and labeled as psychiatric conditions. By joining together as individuals and as a community, the intertwined threads of madness, creativity, and collaboration can inspire hope and transformation.

Website has forum / message board, resources, and links to face-to-face support groups. Write: The Icarus Project , c/o FJC, 520 8th Avenue, 20th Floor, New York, NY 10018. Email: nycicarus@gmail.com Website: http://www.theicarusproject.net

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Wild Minds Network Online. Provides support for individuals with Maladaptive Daydreaming, (MDD), when one feels more empowered during daydreams, starting to enjoy daydreaming better than reality, when daydreaming is starting to interfere with one’s day-to-day activities. Website is a network of individuals seeking to advance the psychological community through their own personal journeys. Website includes groups, chat, blogs, notes and more. Website: http://wildminds.ning.com KLEPTOMANIA | SHOPLIFTING

NATIONAL | INTERNATIONAL | MODEL Shoplifters Anonymous Model. 12-Step. Addiction recovery program for compulsive shoplifters, stealers, thieves and kleptomaniacs. Write: SA, 303 West 42 nd St., Ste 404, New York, NY 10036-6908. Call 212-673-0392. Website: http://home.earthlink.net/~sa514/index.html E-mail: sa514@earthlink.net

ONLINE | TELEPHONE CASA (Shoplifting) Teleconference Support Group Telephone. Provides support for individuals with interest in recovery from their shoplifting behavior. Meets Thurs., 910pm (EST). Call 1-712-432-3900 use Conference ID 201983, followed by the # key.

Kleptomaniacs Anonymous Telephone Support Group 12-Step. Telephone.

Provides support for persons interested in recovery from their shoplifting/stealing behavior. Meets Tues. and Thurs., 7-8:30pm (EST). To participate in group call: 712432-3900 and use Conference ID 335389, followed by the # key. For more information contact The Shilman Center, PO Box 250008, Franklin, MI 48025. Call for information 248-358-8508 Website: http://www.kleptomaniacsanonymous.com/support.htm E-mail: joaniehp@gmail.com MALADAPTIVE DAYDREAMING

ONLINE | TELEPHONE Wild Minds Network Online. Provides support for individuals with Maladaptive Daydreaming, (MDD), when one feels more empowered during daydreams, starting to enjoy daydreaming better than reality, when daydreaming is starting to interfere with one’s day-to-day activities. Website is a network of individuals seeking to advance the psychological community through their own personal journeys. Website includes groups, chat, blogs, notes and more. Website: http://wildminds.ning.com MENTAL HEALTH CONSUMERS

NATIONAL | INTERNATIONAL | MODEL 195

Dual Diagnosis Anonymous Model Group. Approximately a hundred groups in Oregon. Founded 2005. A peer support group based on the 12-steps, which has an additional 5-Steps that focus upon Dual Recovery (from both mental illness and substance abuse). DDA groups are primarily in Oregon. Email or phone for information on some DDA groups outside Oregon, or for free help in starting a new group, click on “Printable Material” to see handouts, which includes information on facilitating and running a DDA group. Write: DDA, PO Box 2883, Portland, OR 92708. Call 503-7374126. Website: http://www.ddaof_oregon.com E-mail: corbettm@ddaof_oregon.com The Icarus Project International. 10+ groups. Provides support for individuals living with and/or affected by experiences that are often diagnosed and labeled as psychiatric conditions. By joining together as individuals and as a community, the intertwined threads of madness, creativity, and collaboration can inspire hope and transformation. Website has forum / message board, resources, and links to face-toface support groups. Write: The Icarus Project, c/o JFC, 520 8th Ave., 20th Floor, New York, NY 10018. Website: http://www.theicarusproject.net E-mail: nycicarus@gmail.com National Alliance on Mental Illness (NAMI) National. 160 groups. Founded 2007.

Provides weekly recovery support groups for consumers living with mental illness where members learn from each others’ experiences, share coping strategies and offer each other encouragement and understanding. Helps anyone interested in starting a group. Call 1-800-950-6264. Website: http://www.nami.org National Mental Health Consumers Self-Help Clearinghouse Resource. Founded 1986. Provides information and recovery-oriented services for mental health consumers. Assistance in self and system advocacy, on-site consultations, training and educational events. Assistance in starting groups. Also provides technical assistance to consumer-run groups. Maintains a database of consumer support and advocacy groups. Write: Nat’l Mental Health Consumers Self-Help Clearinghouse, 1211 Chestnut St., Suite 1207, Philadelphia, PA 19107-4103. Call 1-800-553-4539 or 267-507-3810 (Mon.-Fri., 9am-5pm EST); Fax: 215-636-6312. Website: http://www.mhselfhelp.org E-mail: info@mhselfhelp.org Schizophrenics Anonymous International. 175 groups. Founded 1985. Organized and run by people with a schizophrenia-related disorders. Offers support, fellowship and information. Focuses on recovery, using a 6-step program to augment professional treatment. Weekly meetings and e-newsletters. Provides assistance in starting and maintaining groups. Write: SA, P.O. Box 941222, Houston, TX, 770948222. Call 240-423-9432 or toll-free 1-866-800-5199. Website: http://www.sardaa.org E-mail: info@sardaa.org

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ONLINE | TELEPHONE Depersonalization Disorder Symptom Forum Online. A forum for the mutual support of individuals who struggle with Depersonalization Disorder. Individuals with this disorder struggle with alienation from surroundings (de-realization), lack of ownership of feeling, feelings of automation, lack of agency, not feeling in charge, disembodiment feeling, perceptual distortions of the body, heightened self observation, emotional numbing, anomalies in subjective recall, visual distortions, mind emptiness/no thoughts/thousand mile stare, impaired Spatial-Temporal Reasoning (changes in experience of time; in sense of duration; to perspective of time/temporal disintegration). Website: http://www.dpselfhelp.com/forum Mosaic Minds, Inc. Online. Founded 1999. Seek to provide support via forums and an online clearinghouse of information for those whose lives are impacted by the more extreme form of dissociation called “Dissociative Identity Disorder” (DID), formerly called “Multiple Personality Disorder” (MPD). Website: http://www.mosaicminds.org/forums Rageaholics Anonymous - Stop the Madness Meeting * Telephone. 12-Step.

Support for individuals who seek to keep their compulsive and destructive anger under control. Meets Mon., 11am, Wed., 9:30pm, Fri., 11am (EST). Conference Call 605488-2100, Access Code: 830554#, Back-up Call-in 951-262-7373 will ask for original phone number and then the access code. Website: http://www.rageaholicsanonymous.org E-mail: info@rageaholicsanonymous.org Rageaholics Anonymous - The Positives Meeting * Telephone. 12-Step. Support for individuals who seek to keep their compulsive and destructive anger under control.

Meets Tues., 9:30pm, Thurs., 1pm, Sat., 4pm (EST). Conference Call 605-488-2100, Access Code: 830554#, Back-up Call-in 951-262-7373 will ask for original phone number and then the access code. Website: http://www.rageaholicsanonymous.org E-mail: info@rageaholicsanonymous.org Schizophrenia.com Online. Community dedicated to providing information, support and education to the family members, caregivers and individuals whose lives have been impacted by schizophrenia. Website: http://www.schizophrenia.com MESSINESS | CLUTTERERS | HOARDERS

NATIONAL | INTERNATIONAL | MODEL Clutterers Anonymous International. 80 affiliated groups. Founded 1989. 12-Step.

12-Traditions. Fellowship of individuals who share experience, strength and hope with each other that they may solve their common problem with clutter and help others recover. Based on suggestion, exchange of experiences, rotation of leadership and 197

service. The only requirement for membership is a desire to eliminate clutter and bring order into your life. Telephone meetings and annual conferences. Deals with nonphysical clutter (resentment, time clutter, etc.). Call 1-866-800-3881.

OBSESSIVE-COMPULSIVE DISORDER

NATIONAL | INTERNATIONAL | MODEL Eating Addictions Anonymous - SANE Fellowship National. 6 affiliated chapters.

12-Step. Recovery program for men and women recovering from all forms of eating and body image addictions. Includes anorexia, bulimia, binge eating, overeating, exercise bulimics, etc. Focuses on internal growth and reclaiming bodies rather than weight or appearance. Write: Eating Addictions Anonymous, 1501 Allison St. NW, Washington, DC 20011-7015. Call 202-882-6528. Website: http://www.eatingaddictionsanonymous.org E-mail: 12n12@tidalwave.net International OCD Foundation, Inc. International. Main office and 27 chapters.

Founded 1986. Support and assistance for people with OCD and related disorders, their families, friends, professionals and other concerned individuals. Educates the public and professional communities about obsessive compulsive disorder and related disorders, publishes a quarterly newsletter, annual summer conference, behavior therapy training institutes for mental health professionals, and a speakers bureau for public speaking events. Call 617-973-5801; Fax: 617-973-5803. Write: International OCD Foundation, P.O. Box 961029, Boston, MA 02196. Website: http://www.iocdf.org E-mail: info@iocdf.org Trichotillomania Learning Center International. Founded 1991. Support and information for patients, families and professionals about trichotillomania (compulsive hair pulling and skin picking). Click on “Treatments and Resources” on top bar to see information on local support groups. For some 20 online groups, click on “Join an Online Group” under “Our Community” on left. To learn how to start a community group, click on “Get Involved” on top bar. Information and referrals, newsletter, annual retreat, conferences, phone support, pen pals and literature. Write: TLC, 207 McPherson St., Ste. H, Santa Cruz, CA 95060. Call 831-457-1004; Fax: 831-4275541. Website: http://www.trich.org E-mail: info@trich.org

ONLINE | TELEPHONE OCD and Parenting List Online. Over 2500+ members. Mutual support and information for parents of children with obsessive-compulsive disorder through an email discussion group and professional advisors who respond to questions. Also has 198

an extensive listing of web links. Website: http://health.groups.yahoo.com/group/ocdandparenting E-mail ocdandparentingowner@yahoogroups.com Panic Survivor Online. Support group for persons who suffer from anxiety, panic attacks, social anxiety, generalized anxiety, post-traumatic stress disorder, obsessivecompulsive disorder, hypochondria or any other form of anxiety. Focus is on recovery and day-to-day survival with a “can do� attitude. Website: http://panicsurvivor.com PROCRASTINATION

ONLINE | TELEPHONE Procrastinators Anonymous Online. Provides support to individuals for online, phone and face-to-face meetings. Sharing of experiences and recovery from chronic procrastination. Website provides meeting materials and additional information.

Website: http://procrastinators-anonymous.org SELF-ABUSE | SELF-MUTILATION

NATIONAL | INTERNATIONAL | MODEL Self-Mutilators Anonymous (SMA) National. 22 affiliated groups. 12-Step.

Fellowship of men and women who share their experience, strength and hope with each other, that they may solve their common problem and help others recover from physical self-mutilation. Information resources. Online self-help group meetings available. Website: http://www.selfmutilatorsanonymous.webs.com E-mail: cellogurll1@gmail.com TRAUMA AND POST TRAUMATIC STRESS DISORDER

NATIONAL | INTERNATIONAL | MODEL National Organization for Victim Assistance (NOVA) National. 2,300 members.

Founded 1975. Support and advocacy for victims and survivors of violent crimes and disasters. Newsletter, information, referrals, phone help, conferences, crisis response training and group development guidelines. Referrals to local self-help groups. Dues $50 (individual); $200 (organization). Write: National Organization for Victim Assistance, 510 King St., Suite 424, Alexandria, VA 22314. Call 1-800-879-6682 or 703-535-6682; Fax: 703-535-5500. Website: http://www.trynova.org Trauma Support Network National. Opportunity to connect with other trauma survivors, share experiences, learn how to better manage life after a serious injury and gain support and hope from others. Support groups are facilitated by a trauma 199

survivor. Group members have different types of injuries (head injuries, leg injuries, multiple trauma) resulting from different types of events (motor vehicle crashes, falls, gunshot wounds). Guest speakers. Online support forums for trauma survivors and their families and friends. Write: TSN National Administrator, c/o American Trauma Society, 201 Park Washington Ct., Fall Church, VA 22046. Call 1-800-556-7890 or 703-241-5603. Website: http://www.traumasurvivorsnetwork.org/pages/peersupport-groups E-mail: info@amtrauma.org

ONLINE | TELEPHONE Gift from Within Online. (WOMEN ONLY) Offers a one-on-one post traumatic stress disorder (PTSD) e-mail/penpal support network, where victims of specific trauma can be matched with survivors of similar PTSD. Audio-visual resources available. One-time donation of $5 requested. Write: Gift from Within, Attn: Joyce, 16 Cobb Hill Rd., Camden, ME 04843. Call 207-236-8858; Fax: 207-236-2618. Website: http://www.giftfromwithin.org E-mail: joyceb3955@aol.com or pattipott@aol.com Survivors of Motor Vehicle Accident Support Group Online. Provides support and encouragement to individuals who have been impacted by a motor vehicle accident.

Website: https://www.facebook.com/pages/survivors-of-motor-vehicle-accidentsupport-group/206315732726045 WORKAHOLICS

NATIONAL | INTERNATIONAL | MODEL Workaholics Anonymous World Service Organization, Inc. International. 100+ groups. Founded 1983. 12-step fellowship for men and women who feel their work lives have gotten out of control. Also for affected family members and friends. Provides mutual support in solving problems of compulsive overworking. Available phone and online support and information for those wishing to start a chapter. Offers self-study book, “Workaholics Anonymous Book of Recovery.� Write: Workaholics Anonymous, P.O. Box 289, Menlo Park, CA 94026-0289. Call 510-273-9253. Website: http://www.workaholics-anonymous.org E-mail: wso@workaholicsanonymous.org

MISCELLANEOUS

ARTISTIC CREATIVITY 200

NATIONAL | INTERNATIONAL | MODEL A.R.T.S. Anonymous (Artists Recovering Through the Twelve Steps) International. Founded 1984. Supports artist in overcoming their creative block and avoidance issues so that they can bring their art out into the world. Through a mix of traditional 12-Step literature, tools, weekly meetings, artist-to-artist fellowship, and an Annual Fellowship Convention in May in Ocean Grove, NJ. ARTS establishes a safe haven in which to grow, explore, take risks and celebrate the many facets of ones creativity. Worldwide meetings, including phone meetings, are listed on website along with free literature downloads. Write: A.R.T.S. Anonymous, P.O. Box 230175, New York, NY 10023. Website: http://www.artsanonymous.org E-mail: artseasternregion@yahoo.com BULLYING

ONLINE | TELEPHONE Bullying.org Online. Website provides links to online support groups, help with starting a local face-to-face support group, newsletters, online courses, peer presenters and more. Website: http://www.bullying.org (To find a support group click on ‘I WANT TO SHARE’ then ‘SUPPORT GROUPS’ and/or ‘BECOME AN ONLINE MENTOR’) E-mail: help@bullying.org HeartStrong Network Online. Founded 1998. Provides support for those in the LBGTQI community who were mistreated during their attendance at any religious educational institution. Helps empower those who are still struggling to survive as well as those who have survived these institutions and who have come to love themselves in spite of their spiritual abuse and disciplinary actions taken against them. Those interested in participating in the HeartStrong Network project may register online or write. Write: HeartStrong, 478 E Altamonte Dr., Ste 108 #714, Altamonte Springs, FL 32701. Website: http://www.heartstrong.org (Click on HS Network then click on “register”) E-mail heartstrong@heartstrong.org JFO (Just Fight On) Online Support Group Online. Provides support for people who are being bullied at work. All members are vetted prior to being given access to the group. JFO is a ‘closed group’ to provide a safe environment to share sensitive information. International membership. E-mail to request to join. Website: www.jfo.org.uk E-mail: support@jfo.org.uk Tipton Against Kid’s Being Bullied! Online/Model. Provides support for individuals who have a child or knows of a child who is being bullied. Group will also help those who are not in the Tipton, IA area. Website: https://www.facebook.com/groups/155113894626999

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CRIME VICTIMS | OFFENDERS

NATIONAL | INTERNATIONAL | MODEL Mothers Against Drunk Driving (MADD) National. Founded 1980. Mission is to stop drunk driving, support victims of this violent crime and prevent underage drinking.

Write: MADD, 511 East John Carpenter Freeway, Suite 700, Irving, TX 75062-8187.

Call 1-800-438-6233 (general information); 1-877-623-3435 (victim/survivor hotline); Fax: 972-869-2206. Website: http://www.madd.org National Organization for Victim Assistance (NOVA) National. 2,300 members.

Founded 1975. Support and advocacy for victims and survivors of violent crimes and disasters. Newsletter, information, referrals, phone help, conferences, crisis response training and group development guidelines. Referrals to local self-help groups. Dues $50 (individual); $200 (organization). Write: National Organization for Victim Assistance, 510 King St., Suite 424, Alexandria, VA 22314. Call 1-800-879-6682 or 703-535-6682; Fax: 703-535-5500. Website: http://www.trynova.org Parents of Murdered Children, Inc. (POMC) International. 230 chapters in the US, Canada and Costa Rica. Founded 1978. Provides support for persons who survived the violent death of someone close. Newsletter and guidelines for starting local chapters. Court accompaniment also provided in many areas. Parole Block Program and Second Opinion Service also available. Write: Parents of Murdered Children, 4960 Ridge Ave., Suite 2, Cincinnati, OH 45209. Call 1-888-818-7662 or 513-721-5683 (Mon.-Fri., 8am-5pm EST); Fax: 513-345-4489. Website: http://www.pomc.org Email: natlpomc@aol.com Stalking Victims Sanctuary National. 2582 members. Support and information for people who have fallen victim to individuals who have obsessively focused on them.

Online support group provides the opportunity to share and gain invaluable information from others. Offers resources for identifying stalking, suggestions for dealing with it and regaining control. Write: Stalking Victims Sanctuary, P.O. Box 400, Angels Camp, CA 95222. Website: http://www.stalkingvictims.com

ONLINE | TELEPHONE Prison Talk Online. Support for families of inmates. Also offers support to the incarcerated. Offers mutual support, education and advocacy. Website: http://www.prisontalk.com/forums CULTS

NATIONAL | INTERNATIONAL | MODEL 202

reFOCUS (recovering FOrmer CUltists Support) National network. Founded 1984.

Support for former members of closed, high demand groups, relationships or cults.

Referrals to other former cult members by group and/or area, support groups, therapists, services, recovery workshops and conferences. Literature, free internet newsletter, recovery workshops and conferences. Call 386-439-7541; Fax: 386-4397537. Website: http://www.refocus.org E-mail: refocuscarol@att.net EMPLOYMENT | UNEMPLOYMENT

NATIONAL | INTERNATIONAL | MODEL Neighbors-helping-Neighbors USA Model. Job-seekers self-help group, with 26 groups in AZ, DC, MA & NJ. Founded 2011. Mutual support for those who are actively looking for work, and would like to re-invigorate their job search. Includes laid-off workers, recent college grads, those re-entering the job market, anyone seeking volunteer and part-time work, retirees seeking part-time, and struggling small business owners. Members share support and job leads, assisting each other with techniques and suggestions to improve job search and networking, while setting personal goals between meetings. Values a positive “Pay It Forward” group culture. All groups meet at local public libraries where local librarians skilled in job search resources and skills are available, along with access to computers. Will train volunteer leaders on program to bring a NhN chapter to your town. Website: http://www.NhNusa.org E-mail: john@nhnusa.org

Underearners Anonymous International. 12-Step. Support for people to help themselves and one another recover from underearning. Underearning is not only about earnings although the inability to provide for one’s needs, including future needs is one symptom. Underearning includes underemployed, underachieving and fear of personal growth. Write: UA, P.O. Box 1839, New York, NY 10163-1839. Website: http://underearnersanonymous.org E-mail: info@underearnersanonymous.org FINANCIAL | BANKRUPTCY

ONLINE | TELEPHONE Bankruptcy Support Group | Bankruptcy America Online. Support for individuals who have or are experiencing bankruptcy. Discussion groups. Website: http://www.bankruptcy-america.com/bankruptcy-support-group HOUSING | FORECLOSURES

NATIONAL | INTERNATIONAL | MODEL 203

We Are Moving Forward Model. 1 group in California. Provides peer-based support for distressed homeowners. Helping homeowners cope with the stresses created by the foreclosure process and to educate homeowners of the available options to avoid foreclosure. Assistance with Short Sales. Help with starting groups throughout the US. Write: We Are Moving Forward, P.O. Box 19413, Newbury Park, CA 91319-9413. Call Mike Bertrand, 805-490-6818. Website: http://wearemovingforward.org E-mail: mike@wearemovingforward.org

ONLINE | TELEPHONE National WAMU Homeowners Support Group Online. Provides support for those who have suffered from distressed mortgages and foreclosures (WAMU is now owned

by JP Morgan/Chase). Website: http://www.nationalwamuhomeownerssupportgroup.com E-mail: crharrington@cox.net LGBTQIA

NATIONAL | INTERNATIONAL | MODEL Affirmation: Mormons, Families & Friends International. Supports LGBT/SSA Mormons and their families, friends and Church leaders in seeking to live productive lives consistent with their faith or heritage. It provides a loving, inclusive community for all LGBT/SSA people, regardless of how they identify in their sexual orientation, gender identity or faith. Write: Affirmation, PO Box 898, Anoka, MN, 55303. Website: http://affirmation.org E-mail Todd.Richardson@affirmation.org Ambiguous Genitalia Support Network National. Founded 1994. Provides support for parents of intersex infants/children. Introduces parents for pen-pal support. Write: AGSN, P.O. Box 313, Clements, CA 95227. Call 209-727-0313.

COLAGE (Children Of Lesbians And Gays Everywhere) National. 15 affiliated chapters. Founded 1990. A network of peers that unites people with lesbian, gay, bisexual, transgender, and/or queer parents. Supports, nurtures and empowers individuals to be skilled, self-confident and to promote shared leadership within the collective communities. Sponsors Family Week in Provincetown, MA, regional programs, and has online resources and support groups. Write: COLAGE, 3815 South Otheloo St., Suite 100, #310, Seattle, WA 98118. Call 206-549-2054. Website: http://www.colage.org E-mail: colage@colage.org Family Equality Council National. 160+ local groups. Founded 1979. Support, education and advocacy for gay, lesbian, bisexual or transgender parents, prospective parents and their families. Information and referrals, phone support, family events, 204

literature and newsletter. Assistance in starting groups. Write: Family Equality Council, PO Box 206, Boston, MA 02133. Call 617-502-8700; Fax 617-502-8701. Website: http://www.familyequality.org E-mail: info@familyequality.org International Foundation for Gender Education International. Founded 1978.

Support and educational services for and about gender variant persons (including transsexuals, cross-dressers, intersex, androgynes, non-gendered and multi-gendered persons). Services include referrals to local support groups and to medical and psychological professionals. Speakers program, publication of “Transgender Tapestry� magazine, Synchronicity Bookstore and national outreach. Write: International Foundation for Gender Education, P.O. Box 43445, Washington, DC 20010. Call 781899-2212. Website: http://www.ifge.org E-mail: info@ifge.org PFLAG (Parents, Families and Friends of Lesbians and Gays) National. 350 chapters across the US. Founded 1972. Helps families understand and accept gay, lesbian, bisexual and transgendered family members. Offers help in strengthening families, support groups for families and friends, educational outreach, newsletter, chapter development guidelines, grassroots advocacy, information and referrals. Also has a Transgender Network (PFLAG TNET). For information about TNET call Cesar Hernandez 202-683-9306. Write: P-FLAG, 1828 L Street NW, Suite 660, Washington, DC 20036. Call 202-467-8180; Fax: 202-467-8194. Website: http://www.pflag.org Email: info@pflag.org

Prime Timers Worldwide International. 80 chapters. Provides support and socialization for mature gay and bisexual men in navigating through the transition of healthcare for seniors as well as social acceptance in a rapidly changing society. Help in starting new chapters. Website: http://www.primetimersww.come E-mail: webmaster@primetimersww.com The Rainbow Support Group (RSG) Model. 3 groups (throughout New England).

Founded 1998. Support group for gay, lesbian, bisexual and transgender people with developmental disabilities. Call 203-387-2252 (New Have Pride Center Main Number).

Write: Rainbow Support Group, c/o New Haven Pride Center, 84 Orange St., New Haven, CT 06510. Listserv: rainbowsupport-subscribe@yahoogroups.com Website: https://sites.google.com/site/rainbowdisability/home E-mail: rainbowsupport-owner@yahoogroups.com or RainbowDisability@gmail.com Straight Spouse Network (SSN) International network. 65 groups and 98 state/country contacts. Founded 1986. Confidential personal support network serving current or former heterosexual spouses or partners, of gay, lesbian, bisexual or transgender mates and mixed-orientation couples. Empowers straight spouses or 205

partners to cope constructively and promotes understanding between spouses, within families and with the larger community through education and collaboration. Resource information, research-based publications, referrals, newsletter, reading and media references. Guideline available for starting new groups. Numerous confidential internet lists. Write: Straight Spouse Network, P.O. Box 507, Mahwah, NJ 07430. Call 201-8257763. Support media and research information call 510-595-1005. Website: http://www.straightspouse.org E-mail: dir@straightspouse.org or sssnnj@aol.com

ONLINE | TELEPHONE Affirmation New York City: LGBT Mormons, Familes, and Friends Group Online.

58 members Supports LGBTQ/SSA Mormons and their families, friends and Church leaders in seeking to live productive lives consistent with their faith or heritage. It provides a loving, inclusive community for all LGBTQ/SSA people, regardless of how they identify in their sexual orientation, gender identity, or faith. Join to participate in face-to-face support meetings. Website: https://www.facebook.com/groups/affirmationNYC E-mail: Todd.Richardson@affirmation.org Asexual Visibility and Education Network (AVEN) (MULTILINGUAL) Online.

Provides support for persons who are asexual, older asexual persons, demisexual persons, their partners, friends and family. Website has forums, chat, pen-pals, information and check for local area meet-ups. Website: http://www.asexuality.org Email: info@asexuality.org Asexuals_Anonymous Online. Provides support for individuals who identify as asexual. Serves as a place to talk, lend support, and answer questions to the best of the group’s ability. Site also has resources, archived material, etc. Website: http://asexualsanonymous.tumblr.com Bodies Like Ours | Intersex Information and Peer Support Online. 1000+ members. Primarily provides support via forums. Group seeks to end the shame and secrecy that surrounds people born intersexed and/or with atypical genitals through community and peer support. Separate messages-boards for CAH (congenital adrenal hyperplasia). AIS (Androgen Insensitivity Syndrome), MRKH (Meyer-RokitanskyKuester-Hauser syndrome), Klinefelters syndrome, chromosomal anomalies and more.

Website: http://www.bodieslikeours.org/forums HeartStrong Network Online. Founded 1998. Provides support for those in the LBGTQI community who were mistreated during their attendance at any religious educational institution. Helps empower those who are still struggling to survive as well as those who have survived these institutions and who have come to love themselves in spite of their spiritual abuse and disciplinary actions taken against them. Those interested in participating in the HeartStrong Network project may register online or 206

write. Write: HeartStrong, 478 E Altamonte Dr., Ste 108 #714, Altamonte Springs, FL 32701. Website: http://www.heartstrong.org (Click on HS Network then click on “register”) E-mail heartstrong@heartstrong.org I’ll Walk With You Parent Group Online. Provides support for parents who are committed to staying active in the church while supporting and affirming their LGBT children. Group is primarily restricted to parents and grandparents, but other family members are considered as well on a case by case basis. It is a group that is moderated. Group is ‘secret’ which means that nobody outside of the group will know you are in the group or be able to read your posts there. To gain access to this group you must contact one of the admins, and send them a friend request so they can add you. Contact Greg Searle: https://www.facebook.com/greg.searle.71 or Christy Searle: https://www.facebook.com/christy.searle LDS Family Fellowship: Parents, Families & Friends of LGBT/SSA Mormons, Online. 982 members. Provides support for a diverse collection of Mormon families engaged in the cause of strengthening families with LGBT members by sharing our witness that gay, lesbian, bisexual and transgender (LGBT) Mormons can be great blessings in the lives of their families and that families can be great blessings in the lives of their LGBT members. Website: https://www.facebook.com/groups/134605330021674 LGBTQ, Family and Allies - Mormon Stories Support Community Online. 1,223 members. Provides support for LGBTQ individuals, their family and allies. Website: https://www.facebook.com/groups/lgbtmormonstories The Lord My Pasture Will Prepare (Created and sponsored by Affirmation) Online.

Provides support and fellowship for LGBTQ people who desire to attend the LDS church and are in or seeking a same-sex relationship or are affirming of such relationships. Group is private (secret), meaning only members can read the posts and see who’s in the group. To join this Facebook group please friend the Prepare Group Moderator via facebook: https://www.facebook.com/prepare.groupmoderator Orthodox Parent Phone-In Support Group Telephone. Provides support and advocacy for Orthodox Jewish parents with LGBT children. Participants should feel free to use a pseudonym for confidentiality. Registration is required. Individuals interested should e-mail group contact for brief intake and to receive the call-in number and instructions. Meets 1st Wed., 9pm (EST). Website: http://www.eshelOnline.org/next-phone-in-parent-support-group E-mail: info@eshelOnline.org Regard Online Online. Founded 1989. A UK-based organization of lesbian, gay, bisexual and transgender (LBGT) people who are disabled. Offers information, 207

suggestions and social contact for members through online groups. Provides advocacy and campaigns on issues affecting disabled LBGT people. Provides online newsletters, news and notices. Website: http://www.regard.org.uk or http://facebook.com/#!/group.php?gid=131451632773 and http://uk.groups.yahoo.com/group/regardonline E-mail: secretary@regard.org.uk LIGHTENING | ELECTRICAL SHOCK

NATIONAL | INTERNATIONAL | MODEL Lightning Strike and Electric Shock Survivors International, Inc. International network. Founded 1989. Mutual support and information for survivors of lightning or electric shock, their families, and families of non-survivors. Supports research into the long-term effects. Phone support, annual conference with support groups, help in starting groups, newsletter, information and referrals. Books and tapes available.

Write: LSESSI, P.O. Box 1156, Jacksonville, NC 28541-1156. Call 910-346-4708.

Website: http://www.lightning-strike.org E-mail: info@lightning-strike.org NEAR DEATH EXPERIENCE

NATIONAL | INTERNATIONAL | MODEL International Association for Near-Death Studies International. 36 affiliated groups. Founded 1981. Support and interest groups for anyone who has had a neardeath experience, or who has personal or professional interest in such experiences.

Newsletter, group development guidelines. Write: IANDS, 2741 Campus Walk Ave., Bldg. 500, Durham, NC 27705. Call 919-383-7940. Website: http://www.iands.org PROSTITUTION | SEX WORKERS

NATIONAL | INTERNATIONAL | MODEL Sex Workers Anonymous International. Founded 1987. 12-step. Support for men and women who have a desire to leave the sex industry behind and find recovery. All information is confidential and anonymous. Callers will be referred to a local meeting in their area, and/or telephone meetings. Publishes a Recovery Guide and other information. Write: Sex Workers Anonymous, 3395 S. Jones Blvd., #217, Las Vegas, NV 89146-4660. Call 1-888-253-9619, 702-498-6211 or 702-416-5224. Website: http://www.sexworkersanonymous.net; Facebook: https://www.facebook.com/sexworkersanonymousofficialpage; Twitter: https://twitter.come/FriendsofJodyW E-mail: sexworkrecovery@yahoo.com

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RELIGION | CLERGY

NATIONAL | INTERNATIONAL | MODEL Ex-Muslims of North America (EMNA) National. Provides support for people who used to follow Islam or identify as Muslim, and who no longer do so. The groups help to build a community and provide a sense of solidarity for ‘ex-Muslims’ - As such, this group is only for ex-Muslims, primarily those located in or from North America. Write: EXMNA, 1069 West Broad St., Ste. 142, Falls Church, VA 22046. Call 1-855-3968754. To join local group e-mail: community@exmna.org Website: http://www.exmna.org Religious Recovery National. 13-Step. Provides support for those in need of healing from religious organizations or religious individuals. Organization neither promotes nor denounces any religion and it is not a religious organization. Has Facebook, face-toface and telephone peer support. Helps individuals to start local support groups. Write: Religious Recovery, 5613 Yamassee Dr., Liberty Twp., OH 45011. Call and/or text 513-205-1057. Website: http://www.religiousrecovery.org E-mail: wayne@religiousrecovery.org or patrick@religiousrecovery.org

ONLINE | TELEPHONE The Clergy Project Online. 600+ members. Founded 2011. Confidential online and discussion forum community for current and former religious leaders who do not supernatural beliefs and are struggling with issues. Members can freely discuss the challenges they face on leaving the ministry and establishing a new life. E-mail: clergy@mail.clergyproject.org Facebook: http://www.facebook.com/pages/theclergy-project/203725383030148 Website: http://www.clergyproject.org Ex-Christian.Net Online. 11 groups, 603 members in 11 cities and 3 countries.

Provides support for former Christians and encouragement for individuals interested in de-converting from fundamentalism. Website provides Podcasts, BlogRoll, Forums and even a place to share your story (experiences.) Website: http://new.exchristian.net Meetup: http://exchristian.meetup.com (Links to groups internationally) Yahoo: https://groups.yahoo.com/neo/groups/Ex-ChristianSupport/info HeartStrong Network Online. Founded 1998. Provides support for those in the LBGTQI community who were mistreated during their attendance at any religious educational institution. Helps empower those who are still struggling to survive as well as those who have survived these institutions and who have come to love themselves in spite of their spiritual abuse and disciplinary actions taken against them. Those interested in participating in the HeartStrong Network project may register online or write. Write: HeartStrong, 478 E Altamonte Dr., Ste 108 #714, Altamonte Springs, FL

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32701. Website: http://www.heartstrong.org (Click on HS Network then click on “register�) E-mail heartstrong@heartstrong.org Religious Recovery (telephone support group) Telephone. 13-Step. Provides support for those in need of healing from religious organizations or religious individuals. Organization neither promotes nor denounces any religion and it is not a religious organization. Meetings vary, 7-8pm (EST) Check Facebook page for dates, times, and links to RSVP and reserve your spot: https://www.facebook.com/pages/Religious-Recovery/598915013454248 or contact Wayne or Patrick. E-mail: Wayne@ReligiousRecovery.org Patrick)Patrick@ReligiousRecovery.org Call/Text: 513-205-1057 Website: http://www.religiousrecovery.org Walk Away from Fundamentalism Online. Provides a support forum for those who have left or are in the process of leaving fundamentalist Christianity. Website: http://forum1.aimoo.com/walkaway VETERANS | MILITARY

NATIONAL | INTERNATIONAL | MODEL American Widow Project National network. Mutual support network run by and for widows who have lost a spouse in the military. Provides peer-to-peer and educational support through site, film and events. Call 1-877-297-9436. Website: http://www.americanwidowproject.org E-mail: info@americanwidowproject.org Blinded Veterans Association National. 54 regional groups. Founded 1945.

Support, information and outreach to blinded veterans, including those who were blinded in combat and those suffering from age-related macular degeneration and other eye diseases. Help in obtaining prosthetic devices and accessing the latest technological advances to assist the blind. Information on benefits and rehabilitation programs. Quarterly newsletter. Regional meetings. Write: BVA, 477 H St. NW, Washington, DC 20001. Call 1-800-669-7079 or 202-371-8880; Fax: 202-371-8258.

Website: http://www.bva.org E-mail: bva@bva.org

National Gulf War Resource Center, Inc. National. 61 affiliated groups. Founded 1995. Supports the efforts of grassroots organizations that assist veterans affected by the Persian Gulf War Illness. Also provides advocacy and support for Gulf War veterans, veterans of the Afghanistan & Iraq war and their families. Conducts research into the causes of Gulf War Syndrome. Self-help guides, media assistance, provides congressional testimony, advocacy, literature, information and referrals. Write

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National Gulf War Resource Center, 1725 SW Gage Blvd., Topeka, KS 66604. Call 1866-531-7183. Website: http://www.ngwrc.org E-mail: ngwrc@sbcglobal.net Paralyzed Veterans of America National. 34 chapters and 58 field service offices.

Aim is to ensure that spinal cord injured or diseased veterans achieve the highest quality of life possible. Membership is available solely to individuals who are American citizens with spinal cord dysfunction as a result of trauma or disease. Must have served on active duty and had an other than dishonorable discharge. Support groups, publications, VA benefits counseling, magazine, information and referrals. Write: Paralyzed Veterans of America, 801 18th St. NW, Washington, DC 20006. Call 1-800424-8200 or 202-872-1300 (Mon.-Fri., 9am-5pm EST). Website: http://www.pva.org E-mail: info@pva.org Society of Military Widows National. 24 chapters. Founded 1968. Support and assistance for widows of members of all U.S. uniformed services. Help in coping with adjustment to life on their own. Promotes public awareness. Bimonthly magazine/journal. Dues $19/yr. Chapter development guidelines. Online listing of local chapters. Write: Society of Military Widows, 5535 Hempstead Way, Springfield, VA 22151. Call 1-800-842-3451 ext. 1005 or ext. 1003 (day). Website: http://www.militarywidows.org E-mail: ettabrown@yahoo.com Student Veterans of America (SVA) National. 360 groups. Founded 2008. A coalition of student groups for military veterans on college campuses. Local groups have informal social meetings that serve as peer support groups. Also connects student groups with resources, helps those wishing to start new groups and advocates at the state and national levels. Regional and national conferences. Write: Student Veterans of America, 1625 K Street NW, Suite 320, Washington, DC 20006. Call 202223-4710. Website: http://www.studentveterans.org Tragedy Assistance Program for Survivors (TAPS) National network. Provides support for persons who have lost a loved one while serving in the armed forces (Army, Air Force, Navy, Marine Corps, National Guard, Reserves, Service Academies, Coast Guard or contractors serving beside the military). Offers networking, crisis information, problem solving assistance and liaison with military agencies. Also has regional and national seminars and youth camps. Write: TAPS, 3033 Wilson Blvd., Suite 630, Arlington, VA 22201. Call 1-800-959-8277 or 202-588-8277; Fax: 202-5098282. Website: http://www.taps.org E-mail: info@taps.org Vietnam Veterans of America, Inc. National. 600+ chapters. Founded 1978.

Devoted to the needs and concerns of Vietnam era veterans and their families.

Provides leadership and advocacy in all areas that have an impact on veterans, with an emphasis on Agent Orange related problems and post-traumatic stress disorder.

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Bimonthly newspaper. Write: VVA, 8719 Colesville Rd., Suite 100, Silver Spring, MD 20910. Call 1-800-882-1316 or 301-585-4000 (Mon.-Fri., 9am-5:30pm EST); Fax: 301585-0519. Website: http://www.vva.org

ONLINE | TELEPHONE Iraq and Afghanistan Veterans of America (IAVA) Online. Provides online mutual support networks just for military veterans of the wars in Iraq and Afghanistan. Also links veterans with resources and local events, and advocates for needed support of troops, veterans and their families. Website: http://iava.org Marine Moms Online Online. Discussion forum offers support, information, questions, answers and chatroom for loved ones of U.S. Marines, recruits, poolies and other military personnel. Website: http://www.marinemomsOnline.net (Yahoo) http://groups.yahoo.com/group/mmo1 E-mail: (Linda) alaney42@aol.com Military.com Online. Provides information, discussions, forums, benefits, education, resources, etc. for military personnel in Army, Marines, Navy, Air Force, Coast Guard, National Guard and their spouses. Website: http://www.military.com Veterans of Modern Warfare Online. Provides mutual support and advocacy for individuals who served in the Persian Gulf War and the Wars in Iraq and Afghanistan (from 1990 and onward). Website: http://vmwusa.org WOMEN’S ISSUES

NATIONAL | INTERNATIONAL | MODEL SOWN (Supportive Older Women’s Network) Model. 32 groups in Philadelphia area. Founded 1982. Helps women (ages 60+) cope with their specialized aging concerns. Support groups, leadership training, consultation, telephone support, outreach and networking. Newsletter. Write: SOWN, 4100 Main Street, Suite 200, Philadelphia, PA 19127. Call 215-487-3000; Fax: 215-487-3111. Website: http://www.sown.org E-mail: info@sown.org YOUTH | STUDENTS

NATIONAL | INTERNATIONAL | MODEL National Students of Ailing Mothers and Fathers Support Network International.

Network of university students helping each other cope with the serious illness or death of a parent or loved one. Campus-based mutual support groups, online newsletter, online chats and service projects. Website provides information, group development guidelines and a listing of universities currently interested in group 212

development. Write: National Students of AMF Support Network, 3344 Hillsborough St., Suite 260, Raleigh, NC 27607. Call 1-877-830-7442 or 919-803-6728. Website: http://www.studentsofamf.org Students Against Destructive Decisions (SADD) National. 10,000 chapters.

Founded 1981. Provides prevention and intervention tools to eliminate impaired driving, underage drinking, drug abuse and other destructive decisions. Offers community awareness programs, literature, sponsors SADD chapters and group development guidelines. Write: SADD, 255 Main St., Marlborough, MA 01752. Call 1877-723-3462; Fax: 508-481-5759. Website: http://www.sadd.org E-mail: info@sadd.org

ONLINE | TELEPHONE Conduct Disorders Parent Message Board Online. 7080 members. Founded 1995.

Support for parents of a child with one of the many behavior disorders such as attention deficit hyperactivity disorder, oppositional defiance disorder, bipolar disorder, conduct disorder, depression, anxiety and substance abuse. Parents of children all ages welcome. Website: http://www.conductdisorders.com HeartStrong Network Online. Founded 1998. Provides support for those in the LBGTQI community who were mistreated during their attendance at any religious educational institution. Helps empower those who are still struggling to survive as well as those who have survived these institutions and who have come to love themselves in spite of their spiritual abuse and disciplinary actions taken against them. Those interested in participating in the HeartStrong Network project may register online or write. Write: HeartStrong, 478 E Altamonte Dr., Ste 108 #714, Altamonte Springs, FL 32701. Website: http://www.heartstrong.org (Click on HS Network then click on “register”) E-mail heartstrong@heartstrong.org TeenHelp Online. Founded 1998. Support for young people with any issue through a network of peers and volunteer support staff. Online community of e-mail support, scheduled real-time chat meetings, blogging journal system and moderated message board. Resources, articles and assistance in starting new groups available. Website: http://www.teenhelp.org E-mail: contact@teenhelp.org

TABLEOFCONTENTS FOR TOLL–FREE HELPLI NES & WEB RESOURCES

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ABUSE Child Abuse Domestic Violence Sexual Abuse | Rape|Incest ADDICTIONS Alcohol and Chemical Addiction Debt | Spending Addiction Gambling Addiction Nicotine Addiction BEREAVEMENT Death of a Child | Fetal Loss DISABILITIES Asperger Syndrome|Autism Blind | Visually Impaired Deaf | Hearing Impaired Disability (General) Dyslexia | Learning Disabilities Intellectual & Developmental Disabilities | Down Syndrome Speech | Stuttering FAMILY | PARENTING Adoption | Foster Care Families and Children Services Marriage Missing Person | Children Parenting | Family Pregnancy | Childbirth HEALTH AIDS | HIV Alopecia Areata Alzheimer’s Disease Brain Tumor Cancer Cystic Fibrosis Dental Diabetes Endometriosis Epilepsy Eye Care Facial Disfigurement Gastrointestinal Disorders General|Medical|Emotional|Support Health (General) Heart Disease Hospice Hospital Immune Deficiency 214

Impotence Kidney Disease Leprosy Life-Threatening Illness Lung Disease Marrow Transplants Metabolic Disorder Multiple Sclerosis Neurological Impairment Organ Donation Osteoporosis Paget’s Disease Parkinson’s Disease Patients General Poison Emergency Prescription Drugs | Low Cost Prostate Radiation Rehabilitation Rosacea Scoliosis Spinal Cord Injury Sexually Transmitted Disease Surgery Helpline Urologic Disease Vaccination MENTAL HEALTH Crisis & Information Depression Eating Disorders General|Medical|Emotional|Support Mental Health (General) Psychiatrist|Psychologist|Therapist Self-Abuse Suicide Prevention Trauma & Post Traumatic Stress Disorder MISCELLENEOUS Accident Victims Aging | Senior Citizens Business Charity | Service Organization Consumers | Credit Credit Counseling Crime Victims Discrimination Education Employment | Unemployment Energy|Utilities 215

Food Handling | Food Co-Op Food Pantries|Soup Kitchen|Nutrition Gay, Lesbian, Bisexual & Transgender (LGBTQIA) Grants | Funding Housing Immigrant Insurance Legislation Military | Veterans Pesticide Police Officers Prostitution | Sex Industry Religion | Cults Recovery Runaways Rural Issues Social Security Tax Information Transportation Welfare Women’s Issues Youth | Students

ABUSE

CHILD ABUSE 1 in 6 National/International. Web Resource. Provides courage, hope and strength to men who have had unwanted or abusive sexual experiences in childhood. Helps abuse survivors to live healthier and happier lives. Provides resources for men and those who care about them. Website: http://www.1in6.org Write: 1in6, P.O. Box 222033, Santa Clarita, CA 91322. Website: http://www.1in6.org E-mail: info@1in6.org American Humane Association National Toll-free Helpline. 1-800-227-4645 Mon-Fri 9am-5pm. Mission is to protect children and animals from abuse, neglect and cruelty.

Advocates on behalf of children (capital/corporal punishment, child protective services, medical neglect, etc.) and animals. Website: http://www.americanhumane.org Child Help Inc. National Toll-free Helpline. (BILINGUAL) 1-800-422-4453 (24 hr.)

General information on child abuse and related issues. Referrals to local agencies for child abuse reporting. Crisis counseling. Website: http://www.childhelp.org

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Child Welfare Information Gateway National Toll-free Helpline. (BILINGUAL) 1-800394-3366 (Mon.-Fri., 8:30am-5:30pm EST) Provides information on all aspects of child maltreatment. Website: http://www.childwelfare.gov U.S. Customs Service National Toll-free Helpline. (BILINGUAL) 1-800-232-5378 Will take reports of child pornography on the internet. Aim is to stop this form of child sexual abuse.

DOMESTIC VIOLENCE National Domestic Abuse Helpline for Men and Women National Toll-free Helpline.

1-888-743-5754 Provides crisis intervention and support services to men and women who are dealing with domestic violence.

National Domestic Violence Hotline National Toll-free Helpline. (BILINGUAL) 1-800799-7233 (24 hr.) Information and referrals for victims of domestic violence. Friends of Battered Women & Their Children 1-800-603-4357 Provides support for battered women and their children.

SEXUAL ABUSE | RAPE | INCEST 1 in 6 National/International. Web Resource. Provides courage, hope and strength to men who have had unwanted or abusive sexual experiences in childhood. Helps abuse survivors to live healthier and happier lives. Provides resources for men and those who care about them. Website: http://www.1in6.org Write: 1in6, P.O. Box 222033, Santa Clarita, CA 91322. Website: http://www.1in6.org E-mail: info@1in6.org National Sexual Violence Resource Center National Toll-free Helpline.1-877-7393895 (BILINGUAL) Provides information and referrals relating to all aspects of sexual violence to persons and agencies. Resources include statistics, research, legal, statutes and prevention. Not for crisis situations.

National Teen Dating Abuse Helpline National Toll-free Helpline. 1-866-331-9474 (24 hr.) Provides support, crisis intervention, problem-solving techniques and referrals for victims of dating abuse ages 13-24, their families and advocates. Limited information and referrals for batterers is available as well.

RAINN (Rape, Abuse and Incest National Network) National Toll-free Helpline. 1800-656-4673 (24 hr.) Provides support and confidential crisis counseling for victims of sexual assault. Callers are automatically routed to the crisis center nearest to them.

Website: http://www.rainn.org

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ADDICTIONS

ALCOHOL AND CHEMICAL ADDICTION Double Trouble in Recovery National/International. Web Resource. Founded 1989.

Closed office in 2011. Some 12-step DTR groups still meet, as members help one another solve their common problems, to recover from both their addiction(s) and mental disorder. Free how-to’s on starting DTR groups at website: http://www.hazelden.org/web/go/dtr (below info on DTR “Basic Guide”). How-to’s for professionals helping clients start groups are for sale. To check on any local DTR groups, visit www.power2u.org - click “Consumer-Run Statewide Organizations” on left, and ask your state organization for local dual recovery groups.

National Association for Children of Alcoholics National Toll-free Helpline. 1-888554-2627 (Mon.-Fri., 9am-5pm EST) Advocates for children and families affected by alcoholism and other drug dependencies. Helps children hurt by parental alcohol and drug abuse. Newsletter, advocacy, policy making, literature, videos and educational materials. Website: http://www.nacoa.org National Association for Children of Alcoholics National Toll-free Helpline. 1-888554-2627 (Mon.-Fri., 9am-5pm EST) Advocates for children and families affected by alcoholism and other drug dependencies. Helps children hurt by parental alcohol and drug abuse. Newsletter, advocacy, policy making, literature, videos and educational materials. Website: http://www.nacoa.org National Inhalant Prevention Center National Toll-free Helpline. 1-800-269-4237 Provides information and referrals to persons concerned about inhalants. Literature, training, quarterly newsletter, technical assistance, conducts national inhalant and poisons awareness week. Website: http://www.inhalants.org National Organization on Fetal Alcohol Syndrome National Toll-free Helpline. 1800-666-6327 Provides information and referrals on fetal alcohol syndrome. Offers free packet of information. Website: http://www.nofas.org SAMHSA (Substance Abuse MH Services Administration) National Toll-free Helpline. (BILINGUAL) 1-877-726-4727 Information on alcohol, tobacco and drug abuse. Information on prevention, referrals to treatment centers, research, groups, drugs in the work place, community programs, AIDS, addiction and drug abuse.

Website: http://www.samhsa.gov SAMHSA (Substance Abuse MH Services Administration) National Toll-free Helpline. (BILINGUAL) 1-877-726-4727 Information on alcohol, tobacco, drug abuse and prevention. Referrals to treatment centers, research, groups, drugs in the work place, community programs, AIDS and addiction. Website: http://samhsa.gov 218

DEBT | SPENDING ADDICTION Clear Point Credit Counseling Services National Toll-free Helpline. (BILINGUAL) 1800-388-2227 With touch-tone phone, callers can find out about credit counseling services in their local areas. Sponsored by the National Foundation for Consumer Credit. Website: http://www.clearpointcounselingsolutions.org GAMBLING ADDICTION National Council on Problem Gambling National Toll-free Helpline. 1-800-522-4700 Information, referrals to support groups and counseling for compulsive gamblers.

Website: http://www.800gambler.org NICOTINE ADDICTION JackJackAss.com National/International. Web Resource. An anti-smoking, media literacy website geared to help teens and young adults to quit smoking. Site has a media lesson plan for educators. http://www.jackjackass.com Office on Smoking and Health National Toll-free Helpline. 1-800-232-4636 (Mon.Fri., 8am-8pm EST) Provides information on the affects of tobacco on health, how to stop smoking, second hand smoke and other current topics relating to tobacco.

Sponsored by Federal Government.

Smoker’s Helpline National Toll-free Helpline. 1-877-513-5333. Provides help and support for individuals wishing to quit smoking tobacco. Website: http://sg.stopsmokingcentre.net/support

BEREAVEMENT

DEATH OF A CHILD | FETAL LOSS American SIDS Institute National Toll-free Helpline. 1-800-232-7437 (Mon.-Fri., 9am5pm) Dedicated to the prevention of sudden infant death syndrome. Promotes infant health through research. Education and support for families. Website: http://www.sids.org E-mail: prevent@sids.org First Candle/SIDS Alliance National Toll-free Helpline. (BILINGUAL) 1-800-221-7437 (24 hr.) Information for parents grieving the loss of a child. Website: http://www.firstcandle.org

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Sudden Infant Death Syndrome (SIDS) Helpline National Toll-free Helpline. 1-888674-2999 (24-hr crisis hotline). One-on-one grief counseling available, information on local support groups and online support. Fax: 805-265-5456. E-mail: joeydemellofoundation@gmail.com

DISABILITIES

ASPERGER SYNDROME | AUTISM Asperger Syndrome and High Functioning Autism Association National Toll-free Helpline. 1-888-918-9198 Answers questions and directs callers to assistance and resources all over the country for Asperger Syndrome and related conditions. Website: http://www.ahany.org Autism Speaks National. Web Resource. Started in 2005 by grandparents of a child with autism. Provides online information on local community support groups by state for parents of children with autism. After entering one’s state, scroll down to “Community and Support Network” heading, and click on “Support Group” listings. Call ahead to confirm that any group is still meeting, and inquire as to cost, if any. The website provides many autism resources, both within its Resource Guide and in the many other sections of the website. Write: Autism Speaks, 1060 State Rd., 2nd Fl., Princeton, NJ 08540. Call 609-228-7310. Website: http://www.autismspeaks.org/family-services/resource-guide E-mail: familyservices@autismspeaks.org BLIND | VISUALLY IMPAIRED American Foundation for the Blind National Toll-free Helpline. 1-800-232-5463 (Mon.-Fri., 9am-5pm EST) Clearinghouse of information and referrals for the blind.

Catalog of publications available.

Braille Institute National Toll-free Helpline. 1-800-272-4553 (Mon.-Fri., 9am-3pm PST) Provides publications, cassettes and free books for visually impaired children.

Free Braille calendar. Referrals to resources. Tapes on vision loss available to companies and organizations. Website: http://www.brailleinstitute.org Bright Focus Foundation National Toll-free Helpline. 1-800-437-2423 (Mon.-Fri., 9am-5pm EST) Provides educational information and funds research for Alzheimer’s disease, glaucoma and macular degeneration. Website: http://www.ahaf.org Glaucoma Research Foundation National Toll-free Helpline. 1-800-826-6693 (Mon.Fri., 8:30am-5pm PST) Non-profit, phone support network for persons with glaucoma.

Provides free literature. Website: http://www.glaucoma.org 220

Guide Dog Foundation National Toll-free Helpline. 1-800-548-4337 (Mon.-Fri., 8am5pm EST) Provides dogs to the blind free of charge. Website: http://www.guidedog.org Guiding Eyes for the Blind National Toll-free Helpline. 1-800-942-0149 (Mon.-Fri., 9am-5pm EST) Dedicated to enriching the lives of blind and visually impaired men and women by providing them with guide dogs free of charge. Provides information for students interested in guide dog training. Website: http://www.guidingeyes.org Hadley School for the Blind National Toll-free Helpline. 1-800-323-4238 (Mon.-Fri., 8am-4:30pm CST) Provides free distance education to blind and visually impaired persons using Braille materials, large print or audio-cassettes. Website: http://www.hadley.edu Learning Ally (formerly Recording for the Blind and Dyslexic) Toll-free Helpline. 1866-732-3585 (Mon.-Fri., 8:30am-4:45pm EST) Provides information on recorded textbooks and consumer publications for eligible persons with visual and learning disabilities. Information on volunteer programs for recording CDs. Website: http://www.learningally.org Library of Congress National Library Blind & Phys. Handicapped National Tollfree Helpline. 1-800-424-8567 (Mon.-Fri., 8am-4:30pm EST) Refers callers to libraries that have information on books on tapes and in Braille available for qualified blind or handicapped persons who can’t read standard print. Website: http://www.loc.gov/nls Prevent Blindness National Toll-free Helpline. 1-800-331-2020 (Mon.-Fri.; 8:15am4:45pm CST) Fights vision loss through research, education and direct services.

Provides referrals to local services. Offers literature on vision, eye health and safety.

Website: http://www.preventblindness.org Retinitis Pigmentosa International National Toll-free Helpline. 1-800-344-4877 (Mon.-Fri., 8am-7pm PST) Provides support and information for persons affected by retinitis pigmentosa and their families. Website: http://www.visionawards.org DEAF | HEARING IMPAIRED ASHA Hearing and Speech Association National Toll-free Helpline. (BILINGUAL) 1800-638-8255 (voice/TDD; Mon.-Fri., 8:30am-5pm EST) Information on speech, hearing and language disabilities. Referrals to ASHA certified clinics. Database of information on listening devices. Sponsored by American Speech and Hearing Association. Website: http://www.asha.org Better Hearing Institute National Toll-free Helpline. 1-800-327-9355 (24 hr.)

Information and literature on any hearing-related issues.

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Described and Captioned Media Program (DCMP) National Toll-free Helpline.

(BILINGUAL) 1-800-237-6213 (Mon-Fri., 8am-5pm EST) Provides free loan of described and captioned educational media. Clearinghouse of information related to educational media access and a gateway to Internet resources related to accessibility.

Free registration and services. Sponsored by US Dept. of Education and administered by the National Association of the Deaf.

Dial-A-Hearing Screening Test National Toll-free Helpline. 1-800-222-3277 (Mon.Fri., 9am-4pm EST) Offers over the phone hearing screening for persons (aged 14+).

Provides hearing information and referral services.

HEAR Now National Toll-free Helpline. 1-800-648-4327 (Mon.-Fri., 8am-5pm CST) Helps financially needy individuals obtain hearing aids. Collects used hearing aids for recycling. Information and referrals. Automated telephone line, leave message and call Hearing Aid National Toll-free Helpline. 1-800-521-5247 ext. 2 (Mon.-Fri., 8am-5pm EST) Provides general literature on hearing aids and hearing loss. Referrals to hearing instrument specialists. Leave name and address, information will be mailed.

Sponsored by International Hearing Society.

National Institute on Deafness & Other Communication Disorders National Tollfree Helpline. (BILINGUAL) 1-800-241-1044 (Mon-Fri, 8:30-5pm) Referrals to national agencies on hearing, speech, language, smell, taste, voice and balance disorders.

Publishes fact sheets, brochures, information packets and newsletters.

National Cued Speech Association National Toll-free Helpline. 1-800-459-3529 (voice/TTY) Encourages and supports the use of cued speech for communication, language development and literacy. Networking, literature, advocacy, phone support, conferences, family camps, information and referrals.

DISABILITY (GENERAL) Abledata National Toll-free Helpline. 1-800-227-0216 (Mon.-Fri., 8:30am-5:30pm EST) Provides information, publications and consumer reviews of all types of assistive technologies for persons with disabilities. Sponsored by National Institute on Disability and Rehabilitation Research and U.S. Dept. of Education. Website: http://abledata.com Access Board National Toll-free Helpline. (BILINGUAL) 1-800-872-2253 (Mon, Tues, Thurs & Fri 10am-5:30 EST) Advocates for accessibility. Provides publications and forms to press charges against agencies that are not accessible. Website: http://access-board.gov ADA Technical Assistance Line National Toll-free Helpline.. (BILINGUAL) 1-800514-0301 (Mon.-Fri., 9:30am-5:30pm; Thurs., 12:30-5:30pm EST) Provides free publications on the Americans With Disabilities Act. A new publication will be available each month in a limited supply. Website: http://www.ada.gov/taprog.htm 222

Canine Companions for Independence National Toll-free Helpline. 1-866-224-3647 (Mon.-Fri., 8am-5pm PST) Trains dogs to assist people with physical and developmental disabilities. Also has opportunities for people interested in volunteering to raise puppies.

Disability.gov (US Department of Labor) National. Web Resource. Provides information and connects with resources relating to benefits, housing, health, education, emergency preparedness, employment and transportation. Website: http://www.disability.gov Disabled American Veterans National Toll-free Helpline. 1-877-426-2838 (8am4:30pm EST) Provides free, professional assistance to veterans and their families in obtaining benefits and services earned through military service and provided by the department of Veterans Affairs and other agencies of the government. Guidelines for developing chapters. Website: http://www.dav.org Disabled and Alone National Toll-free Helpline. 1-800-995-0066 (Mon.-Fri., 9am-5pm EST) Helps families and caretakers of a loved one with a disability answer the question, “Who will look after my loved one when I am gone?” by creating a “life plan” and carrying out each family’s plan for their disabled loved one, as directed and funded by the family. Website: http://www.disabledandalone.org E-mail: info@disabledandalone.org Easter Seals National Headquarters Disability Helpline National Toll-free Helpline.

(BILINGUAL) 1-800-221-6827 (Mon.-Fri., 8:30am-5pm CST) Provides disability resource packets for children and adults with disabilities. Website: http://www.easterseals.com Employment Opportunity Commission National Toll-free Helpline.

(MULTILINGUAL) 1-800-669-4000 Information, speakers, technical assistance, training and referrals regarding enforcing ADA and prohibiting discrimination in employment of disabled persons.

Friends’ Health Connection National Toll-free Helpline.. 1-800-483-7436 Communication support network that connects patients and caregivers with any disorder, illness or handicap. Members are networked with each other based on health problem, symptoms, lifestyle, interests, occupation, location and other criteria.

Communicate via letters, phone and e-mail. It is intended for emotional support, not for romantic purposes. Also provides educational, therapeutic and recreational programs.

Membership $9.95. Write: Friends’ Health Connection, P.O. Box 114, New Brunswick, NJ 08903. Website: http://www.friendshealthconnection.org E-mail: info@friendshealthconnection.org

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Job Accommodation Network National Toll-free Helpline. 1-800-526-7234 Information on accommodations for people with disabilities. Sponsored by Office of Disability Employment Policy and Dept. of the Labor.

Library of Congress National Library Blind & Phys. Handicapped National Tollfree Helpline. 1-800-424-8567 (Mon.-Fri., 8:30am-5pm EST) Refers callers to libraries that have information on books on tapes and in Braille available for qualified blind or handicapped persons who can’t read standard print. Website: http://www.lov.gov/nls National Council on Independent Living National Toll-free Helpline. 1-877-525-3400 (Mon.-Fri., 9am-5pm EST) Provides information and referrals to independent living centers. U.S. Equal Technical Assistance Alliance for Parents Centers National Toll-free Helpline. 1888-248-0822 (Mon.-Fri., 8am-5pm CST) Support and education for families of children with any disability. Advocates for the Individuals with Disabilities Education Act. Literature, training sessions, information and referrals.

Through the Looking Glass National Toll-free Helpline. (BILINGUAL) 1-800-6442666 (Mon.-Fri., 8:30am-5pm PST) Phone support, newsletter, information and referrals for disabled parents or parents of disabled children.

University of Montana Rural Institute National Toll-free Helpline. 1-800-732-0323 (Mon.-Fri., 8am-5pm MST) Provides support, education, research and service for children and adults with disabilities who live in rural areas. Technological services, early intervention, personnel development, research and assistive technology services are available.

DYSLEXIA | LEARNING DISABILITIES International Dyslexia Association National Toll-free Helpline. 1-800-222-3123 (Mon.-Fri., 8:30am-4:30pm EST) Provides information and referrals for persons with dyslexia. Website: http://www.interdys.org Learning Ally (formerly Recording for the Blind and Dyslexic) National Toll-free Helpline. 1-866-732-3585 (Mon.-Fri., 8am-4:45pm EST) Information on recorded textbooks and consumer publications for eligible persons with print or learning disabilities. Information on volunteer programs for recording CDs. Website: http://www.learningally.org National Center for Learning Disabilities National Toll-free Helpline. 1-888-5757373 Provides information and referrals for learning disabled adults and children.

Website: http://www.ld.org INTELLECTUAL & DEVELOPMENTAL DISABILITIES | DOWN SYNDROME

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Clearinghouse on Aging and Developmental Disabilities National Toll-free Helpline. 1-800-996-8845 (Mon.-Fri.; 8am-5pm) Aim is to promote independence, productivity, inclusion and self-determination of older adults with developmental disabilities. Provides training, technical assistance and materials to patients, families and professionals. Website: http://www.rrtcdd.org National Down Syndrome Society National Toll-free Helpline. 1-800-221-4602 (Mon.-Fri., 9am-5pm EST) Free packets to new parents, information on education, support groups, medical research, conferences, newsletter, phone support and referrals.

SPEECH | STUTTERING Stuttering Foundation of America National Toll-free Helpline. 1-800-967-7700 or 1800-992-9392 (Mon.-Thurs., 8am-4pm; Fri. 8am-3pm CST) Information and referrals for stutterers and those who treat stutterers. Phone support and conferences.

Maintains a nationwide referral list of speech pathologists that specialize in stuttering.

Website: http://www.stutteringhelp.org

FAMILY|PARENTING

ADOPTION | FOSTER CARE ALMA Society (Adoptees’ Liberty Movement Association) National/International.

Web Resource. Provides moral support and guidance for adopted children in finding their birth parents and/or siblings. Also helps parents find the children they gave up for adoption. Open to foster children (ages 18+). International reunion registry. One-time tax deductible contribution $50. Write: ALMA Society, P.O. Box 85, Denville, NJ 07834.

Fax: 973-586-1358. Website: http://www.almasociety.org E-mail: manderson@almasociety.org National Adoption Center National Toll-free Helpline. 1-800-862-3678 (Mon.-Thurs.

9am-5pm; Fri. 9am-3pm) Information on adoption agencies and support groups.

Network for matching parents and children with special needs. Website: http://www.adopt.org FAMILIES AND CHILDREN SERVICES Alliance for Children and Families National Toll-free Helpline. 1-800-221-3726 Provides resources and services for families and children in financial need focused on financial empowerment. Website: http://aliance1.org/members

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United Neighborhood Centers of America National. Web Resource. Provides information in the following areas: childcare and early childhood development, youth development programs (including Charter and Alternative Schools), basic assistance (food, shelter and clothing), education and training for adults, programs for older Americans. Website: http://www.unca.org/about-us/who-we-are/our-members MARRIAGE Retrouvaille National Toll-free Helpline. 1-800-470-2230 (leave message with your town and state, a return call may take several days) For couples who have a seriously troubled marriage. Couples spend one weekend together working to save their relationship. Program is volunteer-run by couples whose marriages were saved by their having participated in a Retrouvaille weekend. The program may have a Catholic priest involved as a resource person for some sessions but, it is open to couples of any or no faith. The weekend experience is followed by several weekly support group meetings. Suggested donation is $350, but Retrouvaille never turns anyone away.

MISSING PERSON | CHILDREN Child Find of America Hotline National Toll-free Helpline. 1-800-426-5678 (Mon.-Fri., 9am-5pm EST) Helps parents to locate children. Helps lost children who need assistance. Also offers support services. All services are free. Website: http://www.childfindofamerica.org National Center for Missing and Exploited Children National Toll-free Helpline. 1800-843-5678 (24 hr.) Information regarding missing and exploited youth. Helps parents locate missing children.

PARENTING | FAMILY CafeMom National/International. Web Resource. Support for mothers. Covers a wide range of issues relating to mothers and motherhood. Website: http://www.cafemom.com Mom2Mom Helpline Toll-free Helpline. 1-877-914-6662 or 1-877-914-MOM2 (24 hr.)

Peer support helpline for caregivers of children with special needs. Website: http://www.mom2mom.us.com Parenting Support Helpline National Toll-free Helpline. 1-800-244-5373 Provides support for parents in dealing with their children.

PREGNANCY | CHILDBIRTH Abortion Recovery International Toll-free Helpline. 1-866-469-7326 Provides abortion recovery support. National Abortion Federation (BILINGUAL) 1-800-772-9100 (Mon.-Fri., 7am-11pm; Sat.-Sun., 9am-9pm EST) Information and referrals regarding

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abortions. Financial aid. Abortion Provider Finder number: 1-877-257-0012. Website: http://www.prochoice.org Antiepileptic Drug Pregnancy Registry National Toll-free Helpline.

(MULTILINGUAL) 1-888-233-2334 (Mon.-Fri., 8:30am-5pm EST) Registry of women who are taking antiepileptic drugs and who are pregnant. Helps to determine which medications are associated with increased risks. Physicians are encouraged to refer women. Website: http://www.aedpregnancyregistry.org Exhale: After Abortion Hotline National Toll-free Helpline. 1-866-439-4253 (Mon.-Fri. 5pm-10pm; Sat noon-10pm PST) Provides any type of abortion recovery services and/or emotional support.

Lamaze International National Toll-free Helpline. 1-800-368-4404 (Mon-Fri, 9am-5pm EST) Dedicated to promoting normal, natural, healthy and fulfilling childbearing, breastfeeding and early parenting experiences through education, advocacy and reform. Website: http://www.lamaze.org National Hispanic Family Health Helpline National Toll-free Helpline. (BILINGUAL) 1-866-783-2645 (Mon.-Fri., 9am-6pm EST) Provides health information on pregnancy, general healthcare, referrals to healthcare centers and doctors. Sponsored by the National Alliance for Hispanic Health. Website: http://www.hispanichealth.org OTIS (Organization of Teratology Information Services) National Toll-free Helpline.

(MULTILINGUAL) 1-866-626-6847 (Mon.-Fri., 8:30am-4pm PST) Provides local referrals to agencies that provide information concerning prenatal drug, medication, chemical and other potentially harmful exposures. Website: http://www.otispregnancy.org Planned Parenthood National Toll-free Helpline. (BILINGUAL) 1-800-230-7526 Referrals to neighborhood planned parenthood clinics nationwide. Website: http://www.plannedparenthood.org Pregnancy Hotline (National Life Center) Toll-free Helpline. 1-800-848-5683 (24 hr.)

Free, confidential information for pregnant women regarding pregnancy testing, adoption information, legal assistance, baby clothes, formula, adoption referrals and shelters for women and girls. Website: http://www.nationallifecenter.com Pregnancy Hotline National Toll-free Helpline. 1-800-238-4269 (24 hr.) Information and counseling to pregnant women. Referrals to free pregnancy test facilities, foster and adoption centers. Sponsored by Bethany Christian Services. Website: http://www.bethany.org

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HEALTH

AIDS | HIV AIDS Information National Toll-free Helpline. (BILINGUAL) 1-800-448-0440 (Mon.Fri., 1-4pm EST) Resource information on clinical trials for AIDS and HIV+ patients.

Information about current treatments and prevention techniques. Website: http://www.aidsinfo.nih.gov American Social Health Association National Toll-free Helpline. (BILINGUAL) 1-800227-8922 (Mon.-Fri., 8am-8pm EST) Provides information, materials and referrals concerning all types of sexually transmitted infections. Specialists will answer questions on transmission, risk reduction, prevention, testing and treatment. Website: http://www.ashastd.org CDC National Prevention Information Network National Toll-free Helpline..

(BILINGUAL) 1-800-458-5231; TTY: 1-888-232-6348 (Mon.-Fri., 8am-8pm EST) Provides information on resources, educational materials on sexually transmitted diseases including AIDS/HIV, tuberculosis and communities at risk. Many different services and publications offered. Website: http://www.cdcnpin.org Gay Men’s Health Crisis (GMHC) National Toll-free Helpline. 1-800-243-7692 Provides resources for persons with HIV/AIDS. Write: GMHC, 446 West 33rd Street, New York, NY 10001-2601. Website: http://www.gmhc.org HIV Health InfoLine National Toll-free Helpline. 1-866-448-4636 Provides information for those who are diagnosed with HIV. Project Inform National Toll-free Helpline. (BILINGUAL) 1-800-822-7422 (Mon.-Fri., 10am-4pm PST) Information about experimental drugs, treatment of AIDS, volunteer training programs, quarterly newsletter and journal. Website: http://projectinform.org ALOPECIA AREATA Locks of Love National Toll-free Helpline. 1-888-896-1588 (recorded information) (Mon.-Fri., 8:30am-5pm EST) Provides custom hairpieces to financially disadvantaged children (under age 21) with long-term medical hair loss. Uses donated hair. Website: http://www.locksoflove.org ALZHEIMER’S DISEASE Alzheimer’s Disease Education and Referral Center National Toll-free Helpline.

(BILINGUAL) 1-800-438-4380 (Mon.-Fri., 8:30am-5:00pm EST) Provides information and publications on Alzheimer’s disease to health and service professionals, patients, 228

their families, caregivers and public. Sponsored by National Institute on Aging.

Website: http://www.nia.nih.gov/alzheimers Bright Focus Foundation National Toll-free Helpline. 1-800-437-2423 (Mon.-Fri., 9am-5pm EST) Provides educational information and funds research for Alzheimer’s disease, glaucoma and macular degeneration. Website: http://www.ahaf.org BRAIN TUMOR Pediatric Brain Tumor Foundation National Toll-free Helpline. 1-800-253-6530 (Mon.-Fri., 8:30am-5pm EST) Mission is to find the cause and cure of pediatric brain tumors through the support of research; to aid in the early detection of children’s brain tumors; to improve the quality of life of children through better and less invasive treatments and to provide hope, emotional support and information to children and their families. Website: http://www.pbtfus.org CANCER ACOR (Association of Cancer Online Resources) National/International. Web Resource. Click on “Mailing Lists” for over 150 e-mail support groups where patients, caregivers and survivors share their experiences with many different cancers: lung, colon, pancreatic, melanoma, endometrial, esophageal, leiomyosarcoma, male breast, metastatic, myeloproliferative disorders, mycosis fungoides, various sarcomas, stomach, testicular, thyroid, pediatric, retinoblastoma, etc., as well as possible related issues such as fatigue, finance, depression, bone marrow transplant, facing the death of a loved one and other situations. Website: http://www.acor.org American Cancer Society National Toll-free Helpline. (MULTILINGUAL) 1-800-2272345 (24 hr.) Information and referral on various issues related to cancer treatment, services, literature, transportation, equipment, encouragement and support. English, Spanish and Chinese speaking. Website: http://www.cancer.org Anderson Network Toll-free Helpline. 1-800-345-6324 (Mon.-Fri., 8am-5pm CST) Matches cancer patients with others with exact diagnosis for support. Website: http://www.mdanderson.org/andersonnetwork BLOCH Cancer Hotline National Toll-free Helpline. 1-800-433-0464 (Mon.-Fri. 9am4pm CST) Networks persons with cancer and home volunteers with same type of cancer. Free books about cancer. Website: http://blochcancer.org Cancer Care National Toll-free Helpline. (BILINGUAL) 1-800-813-4673 Free counseling for cancer patients and their families. Financial assistance, information and referrals, community and professional education. Teleconference programs. On-going telephone and in-person support groups. Website: http://www.cancercare.org Cancer Hope Network National Toll-free Helpline. 1-877-467-3638 (Mon.-Fri., 9am5:30pm EST) One-on-one support offered to cancer patients and their families 229

undergoing cancer treatment from trained volunteers who have survived cancer themselves. Website: http://www.cancerhopenetwork.org Cancer Information Service National Toll-free Helpline. (BILINGUAL) 1-800-4226237 Provides information about cancer and cancer-related resources to patients, the public and health professionals. Offers one-on-one smoking cessation counseling and literature. Free publications. Sponsored by National Cancer Institute. Website: http://www.cancer.gov Cancer Research Institute National Toll-free Helpline. 1-800-992-2623 (Mon.-Fri., 9am-5pm EST) Provides general cancer resource information. Supports leading-edge research aimed at developing immunologic methods of preventing, treating and curing cancer. Website: http://www.cancerresearch.org Cancer Support Community’s Helpline National Toll-free Helpline. 1-888-793-9355 (Mon.-Fri. 9am-8pm EST) Website: http://www.cancersupportcommunity.org Email: help@cancersupportcommunity.org Cleaning For A Reason National Toll-free Helpline. 1-877-337-3348 Offers free professional housecleaning and maid services to improve the lives of women undergoing treatment for any type of cancer. Website: http://www.cleaningforareason.org CureSearch National Toll-free Helpline. 1-800-458-6223 (Mon.-Fri., 8:30am-5:30pm EST) Active in the search to cure childhood cancer. Involved with research, care, public awareness and fundraising. Information and e-newsletter. Website: http://www.curesearch.org Dana Farber Cancer Institute Family Studies Cancer Risk Line National Toll-free Helpline. 1-800-828-6622 Information regarding familial cancers. Website: http://www.dana-farber.org Gilda Radner Familial Ovarian Cancer Registry National Toll-free Helpline. 1-800682-7426 (Mon.-Fri., 9am-5pm EST) Information on the warning signs of cancer, diagnostic tests and family history. Sponsored by Roswell Park Cancer Institute.

Website: http://ovariancancer.com HIS Breast Cancer Awareness, Inc. National/International. Web Resource. Founded 2011. Provides resources and information for men with breast cancer. Write: HIS Breast Cancer, c/o Harvey Sincer, 19 Dixon Woods, Honeone Falls, NY 14472.

Website: http://www.hisbreastcancer.org E-mail: hisbreastcancer@gmail.com International Myeloma Foundation National Toll-free Helpline. 1-800-452-2873 (Mon.-Fri., 9am-4pm PST) Information, seminars, grants and newsletter on myeloma.

Website: http://www.myeloma.org

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The Leukemia and Lymphoma Society (LLS) National Toll-free Helpline. 1-800-9554572 Dedicated to funding blood cancer research, education and patient services.

Website: www.lls.org Living Beyond Breast Cancer National Toll-free Helpline. 1-888-753-5222 (Mon.-Fri., 9am-9pm EST) Provides information to women, their families and caregivers who are impacted by breast cancer. Website: http://www.lbbc.org/helpline Locks of Love National Toll-free Helpline. 1-888-896-1588 (recorded information) (Mon.-Fri., 8:30am-5pm EST) Provides custom hairpieces to financially disadvantaged children (under age 21) with long-term medical hair loss. Uses donated hair. Website: http://www.locksoflove.org Men Against Breast Cancer National Toll-free Helpline. 1-866-547-6222 Offers educational materials, online videos, workshops, and one-on-one networking with other men, whose loved one has breast cancer. Conducts National Male Caregivers Conference and regional training workshops. Website: http://www.menagainstbreastcancer.org Ovarian Cancer Research Fund National Toll-free Helpline. 1-800-873-9569 (Mon.Fri., 9am-5:30pm EST) Dedicated to advancing and supporting laboratory and clinical research that promotes the development of new therapies and techniques for early detection, screening and treatment of ovarian cancer. Educational outreach, public awareness projects, including videos and resource materials available. Website: http://www.ocrf.org Patient Advocate Foundation National Toll-free Helpline. 1-800-532-5274 (Mon.Thurs., 8am-8pm; Fri., 8:30am-7pm EST) Provides education and legal counseling to cancer patients (relative to a diagnosis) concerning managed care, discrimination, insurance and financial issues. Website: http://www.patientadvocate.org Skin Cancer Foundation National Toll-free Helpline. 1-800-754-6490 (Mon.-Fri., 9am5pm EST) Provides educational materials and information on skin cancer and treatment. Website: http://www.skincancer.org Susan G. Komen Breast Cancer Foundation National Toll-free Helpline.

(BILINGUAL) 1-877-465-6636 (Mon.-Thurs., 9am-7pm, Fri., 9am-5pm CST) Information on breast health. Website: http://www5.komen.org CYSTIC FIBROSIS Children’s Organ Transplant Association National Toll-free Helpline. 1-800-3662682 (Mon.-Fri., 8am-5pm EST) Provides public education on organ transplants.

Assists families in fund-raising for transplant and transplant-related expenses.

Assistance for all children and adults with cystic fibrosis who are U.S. citizens in need of an organ transplant.

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Cystic Fibrosis Foundation National Toll-free Helpline. 1-800-344-4823 (Mon.-Fri., 8:00am-6:00pm EST); Pharmacy: 1-800-541-4959 Provides information, brochures, insurance information, pharmaceutical services and updates on research.

DENTAL Dental Life Line Network National Toll-free Helpline. 1-888-471-6334 (Mon.-Fri., 8am-5pm MST) Information on free dental care for qualified elderly, disabled or chronically ill patients. Services include dentures, crowns or other significant dental work. Website: http://www.dentallifeline.org DIABETES National Institute of Diabetes & Digestive & Kidney Diseases National Toll-free Helpline. 1-800-891-5390 (kidney); 1-800-860-8747 (diabetes); 1-800-891-5389 (digestive diseases) (Mon.-Fri., 8:30am-5pm EST) Provides referrals and literature on a broad range of subjects concerning diabetes, digestive disorders, kidney disease, metabolic and endocrine disorders, hematologic diseases and urologic disorders.

American Diabetes Association Helpline National Toll-free Helpline. 1-800-3422383 (Mon.-Fri., 8:30am-8pm EST) Information and referral for individuals affected by diabetes. Provides funding research to prevent, cure and manage diabetes. Website: http://www.diabetes.org National Diabetes Education Program National Toll-free Helpline. (BILINGUAL) 1800-438-5383 (Mon.-Fri., 8:30am-5pm EST) Provides educational information on diabetes. Publishes “Do Your Level Best� kit and diabetes kit to public and health care professionals. Sponsored by National Institute of Diabetics, Digestive and Kidney Diseases and Center for Diabetes Control and Prevention. Website: http://www.knowyourdiabetesinfo.org (brochures on Website).

ENDOMETRIOSIS Endometriosis Research Center National Toll-free Helpline. 1-800-239-7280 or 561274-7442 (day) Offers a large database of information on endometriosis. Website: http://www.endocenter.org E-mail: exec-comm@endocenter.org EPILEPSY Epilepsy Information Service National Toll-free Helpline. 1-800-642-0500 (Mon.-Fri., 8am-5pm EST) Answers general questions on epilepsy. Free literature, conducts workshops and conferences.

EYE CARE

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Eye Care America National/International. Web Resource. Assists financially disadvantaged persons in obtaining medical eye care. Sponsored by American Academy of Ophthalmology Foundation. Website: http://www.eyecareamerica.org FACIAL DISFIGUREMENT Children’s Craniofacial Association National Toll-free Helpline. 1-800-535-3643 (Mon.-Fri., 8:30am-4:30pm CST) Provides information and support for children with craniofacial disfigurement and their families. Makes referrals to doctors and support groups. Disseminates educational booklets. Information on free medical clinics, Cher’s Family Retreat and advocacy. Website: http://www.ccakids.org FACES: The National Craniofacial Association National Toll-free Helpline. 1-800332-2373 (Mon.-Fri. 9am-5pm EST) Dedicated to assisting children and adults with craniofacial disorders resulting from disease, accident or birth. Financial assistance, referrals to support groups, newsletter, information and referrals to services and medical professionals. Website: http://www.faces-cranio.org GASTROINTESTINAL DISORDERS National Institute of Diabetes & Digestive & Kidney Diseases National Toll-free Helpline. 1-800-891-5390 (kidney); 1-800-860-8747 (diabetes); 1-800-891-5389 (digestive diseases) (Mon.-Fri., 8:30am-5pm EST) Provides referrals and literature on a broad range of subjects concerning diabetes, digestive disorders, kidney disease, metabolic and endocrine disorders, hematologic diseases and urologic disorders.

GENERAL | MEDICAL | EMOTIONAL SUPPORT DailyStrength National/International. Web Resource. Medical and emotional support community - physical health, mental health, support groups. Website: http://www.dailystrength.org Delphi Forums National/International. Web Resource. Online support community that has support groups, forums, chat and more. Website: http://www.delphiforums.com Experience Project National/International. Web Resource. Online support groups for many issues and life experiences. Website: http://www.experienceproject.com Meetup National/International. General. Web Resource. Used to plan offline (face-toface) meetings for people interested in a variety of support groups and other activities.

Website: http://www.meetup.com SupportGroups National/International. Web Resource. Online community of persons interested in forming support groups within this networking site. Website: http://www.supportgroups.com

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Tools to Life National/International. Online. Web Resource. Support groups and group bonding with peers, friends and role models. Website: http://toolstolife.com Tribe.Net National/International. Web Resource. Online support community that has many categories. A place to connect with others “to find your community on Tribe”.

Website: http://www.tribe.net HEALTH (GENERAL) American Board of Medical Specialties National Toll-free Helpline. 1-866-275-2267 Will tell you if your physician is board certified. Website: http://www.abms.org American Dietetic Association National Toll-free Helpline. (BILINGUAL) 1-800-8771600 (Mon.-Fri., 8am-5pm CST) Information on diet. Referrals to dietitians. Brochures available. Sponsored by National Center for Nutrition and Diatetics.

Bright Focus Foundation 1-800-437-2423 (Mon.-Fri., 9am-5pm EST) Provides educational information and funds research for Alzheimer’s disease, glaucoma and macular degeneration. Website: http://www.ahaf.org Centers for Disease Control and Prevention National Toll-free Helpline.

(BILINGUAL) 1-800-232-4636 Provides information on health related topics, vaccinations, traveler’s health, grants, genetics, hoaxes, rumors and emergency responses.

DES Action USA National Toll-free Helpline. 1-800-337-9288 Information for women who were prescribed DES during pregnancy and their children. Referrals and education for the public and health workers. Quarterly newsletter. Website: http://www.desaction.org E-mail info@desaction.org Friends’ Health Connection National Toll-free Helpline. 1-800-483-7436 Communication support network that connects patients and caregivers with any disorder, illness or handicap. Members are networked with each other based on health problem, symptoms, lifestyle, interests, occupation, location and other criteria.

Communicate via letters, phone and e-mail. It is intended for emotional support, not for romantic purposes. Also provides educational, therapeutic and recreational programs.

Membership $9.95. Write: Friends’ Health Connection, P.O. Box 114, New Brunswick, NJ 08903. Website: http://www.friendshealthconnection.org E-mail: info@friendshealthconnection.org Health Information Helpline National Toll-free Helpline. 1-855-417-8555 or 1-877888-6647 (24/7/365) Calls are answered by an experienced registered nurse who can answer a wide range of general health questions. Using proven national guidelines, developed by physicians, callers will be asked questions about symptoms, medical history and current medications so that questions will be understood and answered accurately. Information is completely private, no one is required to give their name.

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Before making an unnecessary trip to an urgent care center or emergency room, call the Health Information Helpline.

Healthy Women Resource Center National Toll-free Helpline. 1-877-986-9472 Provides information on women’s health issues. Dedicated to helping women make informed decisions about their health.

Medicare + Choice Helpline Assistant National Toll-free Helpline. (BILINGUAL) 1800-633-4227 Provides information on Medicare, Medigap and health plan options.

Publications and audiotapes. Sponsored by federal government.

Minority Health Resource Center National Toll-free Helpline. 1-800-444-6472 (Mon.Fri., 9am-5pm EST) Federally-funded library service that provides information and referral to sources on health problems for minorities. Website: http://www.minorityhealth.hhs.gov National Center on Complementary and Alternative Medicine National Toll-free Helpline. (BILINGUAL) 1-888-644-6226 (Mon.-Fri., 8:30am-5pm EST) Provides information on clinical trials and current research projects conducted on alternative medicine. Website: http://nccam.nih.gov National Library of Medicine National Toll-free Helpline. 1-888-346-3656 (Mon.-Fri., 8:30am-5pm; Sat., 8:30am-2pm EST) Provides information and referrals to help callers research health questions. Website: http://www.nlm.nih.gov National Women’s Health Information Center National Toll-free Helpline.

(BILINGUAL) 1-800-994-9662 (Mon.-Fri., 9am-6pm EST) Provides information and referrals for all women’s health questions, including questions on breastfeeding.

Website: http://www.womenshealth.gov NORD (National Organization for Rare Disorders) National Toll-free Helpline. 1800-999-6673 (in Connecticut 203-744-0100) (Mon.-Fri., 9am-5pm EST) Information and networking for persons with rare disorders. Literature. Website: http://www.rarediseases.org “Su Familia” Health Helpline National Toll-free Helpline. (BILINGUAL) 1-866-7832645 (Mon.-Fri., 9am-8pm EST) or 1-800-504-7081 (pre-natal) Provides confidential health information to Hispanic patients and their families. Provides bilingual fact sheets for a wide variety of health topics. Sponsored by the National Alliance for Hispanic Health. Website: http://www.hispanichealth.org Visiting Nurse Association of America National Toll-free Helpline. 1-888-866-8773 (Mon.-Fri., 8:30am-5pm EST) Referrals to local Visiting Nurse Associations. Website: http://www.vnaa.org HEART DISEASE 235

American Heart Association National Toll-free Helpline. (BILINGUAL) 1-800-2428721 (24 hr.) Information on heart health and support groups. Website: http://www.heart.org Texas Heart Institute Heart Information Service National Toll-free Helpline. 1-800-292-2221 (Mon.-Fri., 8am-3pm CST) Answers questions on cardiovascular issues via phone, mail or e-mail.

Literature on aneurisms, cholesterol, heart transplants, stroke patients, women and heart disease. Information on support groups. Website: http://www.texasheart.org HOSPICE Hospice Education Institute National Toll-free Helpline. 1-800-331-1620 (Mon.-Fri., 9am-4:30pm EST) Provides information and referrals regarding hospice care. Website: http://www.hospiceworld.org Hospice Foundation of America National Toll-free Helpline. 1-800-854-3402 (Mon.Fri., 8am-6pm EST) Provides education and information on hospice care. Sponsors research. Offers teleconference series “Living with Grief” for bereaved families.

Audiotapes for clergy. Website: http://www.hospicefoundation.org National Hospice and Palliative Care Organization National Toll-free Helpline. 1800-658-8898; 1-877-658-8896 (SPANISH) (Mon.-Fri., 9am-5pm EST) Information for hospice care of terminally ill persons. Referrals to hospice programs nationwide.

Website: http://www.caringinfo.org HOSPITAL Believe In Tomorrow Children’s Foundation National Toll-free Helpline. 1-800-9335470 (Mon.-Fri., 8:30am-5pm EST) Provides retreat housing services to critically ill children and their families. Offers “Hands on Adventures” program for critically ill children. Hospital housing is available for patients at Johns Hopkins Children’s Center.

Website: http://www.believeintomorrow.org Hill Burton Hotline National Toll-free Helpline. (BILINGUAL) 1-800-638-0742 Using a touchtone phone, caller can get information about free hospital care for low income eligible persons. Directory of medical centers that are part of Hill Burton program throughout US. Shriner’s Hospital National Toll-free Helpline. (BILINGUAL) 1-800-237-5055 (Mon.Fri., 8am-5pm EST) Information on free hospital care available to children under the age of 18 needing treatment for burns, spinal cord injury, cleft palate or orthopedic care. If line is busy, leave your phone number including area code. Website: http://www.shrinershospitalforchildren.org IMMUNE DEFICIENCY

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Jeffrey Modell Foundation National Toll-free Helpline. (BILINGUAL) 1-866-463-6474 (24 hr.) Provides information on specific primary immune deficiency diseases.

Referrals to major medical centers, psychiatric, and social support services.

Information on insurance reimbursement.

IMPOTENCE Impotence Information Center National Toll-free Helpline. 1-800-843-4315 (Mon.Thurs. 9am-4pm CST) Provides free information about the causes and treatments of impotence. Brochures and a list of local physicians who treat impotence available.

Website: http://www.americanmedicalsystems.com KIDNEY DISEASE American Kidney Fund National Toll-free Helpline. (BILINGUAL) 1-800-638-8299 (Mon.-Thurs., 8:30am-5pm; Fri. 8am-2pm EST) Provides information, referrals and financial assistance to kidney patients. Counselors available to answer questions about kidney disease and transplants. Website: http://www.kidneyfund.org Kidney and Urology Foundation of America National Toll-free Helpline.

(BILINGUAL) 1-800-633-6628 (Mon.-Fri., 9am-5pm EST) Dedicated to helping persons afflicted with any debilitating kidney, urologic or related diseases. Offers education, information, health fairs, grants, patient scholarships, physician referrals, fellowship and Pediatric Enrichment program. Website: http://www.kidneyurology.org National Institute of Diabetes & Digestive & Kidney Diseases National Toll-free Helpline. 1-800-891-5390 (kidney); 1-800-860-8747 (diabetes); 1-800-891-5389 (digestive diseases) (Mon.-Fri., 8:30am-5pm EST) Provides referrals and literature on a broad range of subjects concerning diabetes, digestive disorders, kidney disease, hematologic diseases, urologic disorders, metabolic and endocrine disorders.

National Kidney Foundation - Peers Lending Support National Toll-free Helpline. 1855-653-7337 Connects individuals to one-on-one support from someone who has been there. Helps individuals adjust to living with chronic kidney disease, kidney failure, or a kidney transplant. E-mail: nkfpeers@kidney.org National Kidney Foundation National Toll-free Helpline. (BILINGUAL) 1-800-6229010 (Mon.-Fri., 8:30am-5pm EST) Provides education and research information on kidney disease. Referrals to local affiliates. Website: http://www.kidney.org LEPROSY American Leprosy Missions National Toll-free Helpline. 1-800-543-3135 (Mon.Thurs., 8am-5pm; Fri., 8am-noon EST) Provides information on projects and programs that fight leprosy in 23 countries. Website: http://www.leprosy.org LIFE-THREATENING ILLNESS 237

Caring Connections National Toll-free Helpline. 1-800-658-8898 (Mon.-Fri., 9am-5pm EST) Provides information and education concerning end-of-life issues. Answers caregiver questions. Website: http://www.caringinfo.org Friends of Karen, Inc. Toll-free Helpline. (NJ/NY/CT) 1-800-637-2774 (Mon.-Fri, 9am5pm) Provides assistance in the NY metropolitan area, northern New Jersey and Fairfield, Connecticut. Dedicated to providing emotional, financial and advocacy support to children from birth to 21 years of age with life-threatening illnesses and their families. Information packets available. Website: http://www.friendsofkaren.org LUNG DISEASE Allergy and Asthma Network - Mothers of Asthmatics National Toll-free Helpline.

(BILINGUAL) 1-800-878-4403 (Mon.-Thurs., 8am-5pm; Fri., 9am-noon EST) Provides emotional support and patient education resources for persons with asthma and allergies. Newsletter. Website: http://www.allergyasthmanetwork.org Office on Smoking and Health National Toll-free Helpline. 1-800-232-4636 (Mon.Fri., 8am-8pm EST) Provides information on the affects of tobacco on health, how to stop smoking, second hand smoke and other current topics relating to tobacco.

Sponsored by Federal Government.

National Jewish Health | Lung Line National Toll-free Helpline. 1-800-222-5864 (Mon.-Fri., 8am-4:30pm MST) Information and referrals. Registered nurses answer questions on all types of lung diseases. Referrals to doctors. Free literature. Website: http://www.njhealth.org MARROW TRANSPLANT Be The Match Registry National Toll-free Helpline. 1-800-726-2824 (Mon.-Fri., 8:30am-5pm EST) Comprehensive international resource for patients and physicians conducting a search for unrelated bone marrow or cord blood donor. Website: http://www.nationalmarrowdonorprogram.org National Bone Marrow Transplant Link National Toll-free Helpline. 1-800-546-5268 (Mon.-Fri., 9am-4:30pm EST) Provides information and referral for bone marrow and stem cell transplants for patients, family and professionals. Referrals to support groups. Peer-support, online and phone support groups, information on becoming a donor and educational booklets. Website: http://www.nbmtlink.org National Marrow Donor Program National Toll-free Helpline. 1-800-526-7809 (Mon.Fri., 8am-6pm CST) Provides information on bone marrow and stem cell transplants and information on becoming a marrow donor. Maintains computerized data bank of available tissue-typed marrow donors nationwide. Provides patient advocacy to assist patients through the donor search and transplant process. Website: http://www.bethematch.org 238

METABOLIC DISORDER National Institute of Diabetes & Digestive & Kidney Diseases National Toll-free Helpline. 1-800-891-5390 (kidney); 1-800-860-8747 (diabetes); 1-800-891-5389 (digestive diseases) (Mon.-Fri., 8:30am-5pm EST) Provides referrals and literature on a broad range of subjects concerning diabetes, digestive disorders, kidney disease, hematologic diseases, urologic disorders, metabolic and endocrine disorders.

NIH Osteoporosis & Related Bone Diseases Resource Center National Toll-free Helpline. (MULTILINGUAL) 1-800-624-2663 (Mon.-Fri., 8:30am-5pm EST) Provides written resource information on metabolic bone diseases such as osteoporosis, Paget’s disease, osteogenesis imperfecta and primary hyperparathyroidism to patients, professionals and the public. Annotated bibliography on current research available to professionals. Website: http://www.bones.nih.gov MULTIPLE SCLEROSIS Multiple Sclerosis Foundation National Toll-free Helpline. 1-800-441-7055 (Mon.Fri., 9am-7pm EST) Support services for those diagnosed with multiple sclerosis.

Grants for research, information and referrals on traditional and alternative treatments.

Online doctors forum. Newsletter and phone support. Website: http://www.msfocus.org NEUROLOGICAL IMPAIRMENT National Institute of Neurological Disorders & Stroke National Toll-free Helpline. 1800-352-9424 (Mon.-Fri., 8:30am-5pm EST) Provides information on neurological disorders and stroke. Sponsored by National Institute of Health. Website: http://www.ninds.nih.gov ORGAN DONATION Children’s Organ Transplant Association National Toll-free Helpline. 1-800-3662682 (Mon.-Fri., 8am-5pm EST) Assists families in fund-raising for transplant and transplant-related expenses. Support for all children and adults with cystic fibrosis who are U.S. citizens in need of an organ transplant. Website: http://www.cota.org National Foundation for Transplants National Toll-free Helpline. 1-800-489-3863 (Mon.-Fri., 8:30am-4:30pm CST) Provides support services, financial assistance and advocacy to adult and child organ and bone marrow transplant candidates and recipients. Assists in fund-raising activities. Website: http://www.transplants.org OSTEOPOROSIS NIH Osteoporosis and Related Bone Diseases Resource Center National Toll-free Helpline. (MULTILINGUAL) 1-800-624-2663 (Mon.-Fri., 8:30am-5pm EST) Provides written resource information on metabolic bone diseases such as osteoporosis, 239

Paget’s disease, osteogenesis imperfecta and primary hyperparathyroidism to patients, professionals and the public. Annotated bibliography on current research available to professionals. Website: http://www.bones.nih.gov PAGET’S DISEASE NIH Osteoporosis and Related Bone Diseases Resource Center National Toll-free Helpline. (MULTILINGUAL) 1-800-624-2663 (Mon.-Fri., 8:30am-5pm EST) Provides written resource information on metabolic bone diseases such as osteoporosis, Paget’s disease, osteogenesis imperfecta and primary hyperparathyroidism to patients, professionals and the public. Annotated bibliography on current research available to professionals. Website: http://www.bones.nih.gov PARKINSON’S DISEASE National Parkinson’s Foundation National Toll-free Helpline. (BILINGUAL) 1-800473-4636 (Mon.-Fri., 9am-5pm EST) Professional will answer any question on Parkinson’s disease. Website: http://www.parkinson.org Parkinson’s Disease Foundation, Inc. National Toll-free Helpline. 1-800-457-6676 (Mon.-Fri., 9am-5pm EST) Leading national presence in Parkinson’s disease research, education and public advocacy. Provides educational materials and support service through toll-free helpline, web service and print/video materials. Website: http://www.pdf.org or http://www.parkinson.org PATIENTS (GENERAL) Ben’s Friends Patient Support Communities National/International. Web Resource.

Online network of safe and supportive patient communities for anyone affected by a rare disease. Website: http://www.bensfriends.org CaringBridge National/International. Web Resource. Provides free website that connect family and friends during a serious health event, care and recovery. Website: http://www.caringbridge.org MDJunction National/International. Web Resource. Support groups for health challenges. Website: http://www.mdjunction.com MedWonders - Networking for Health National/International. Web Resource.

Support groups, community, discussions, and more. Website: http://www.medwonders.com Patients-Connect.Com National/International. Web Resource. Free online community of support groups for people battling injuries and disease. Opportunity to connect with others that have the same illnesses to share support and get through the fight together. Website: http://www.patients-connect.com

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PatientsLikeMe National/International. Web Resource. Online community for patients with life-changing illnesses to find other patients like them, share their data with others, and learn more about their condition to improve their outcome. Website: http://www.patientslikeme.com POISON EMERGENCY Poison Emergency Hotline National Toll-free Helpline. 1-800-222-1222 (24 hr.)

Emergency helpline that provides information on medication errors, drug overdoses, food poisoning, food safety, etc. Website: http://www.aapcc.org PRESCRIPTION DRUGS | LOW COST Partnership for Prescription Assistance National Toll-free Helpline. (BILINGUAL) 1888-477-2669 Mails a directory of various pharmaceutical assistance programs for persons who cannot afford prescriptions on their own. Website: http://www.pparx.org USA Drug Plan National Toll-free Helpline and Web Resource. Provided by Community Assistance Program CAP 1-877-459-8474 Rx Help Desk Website has printable cards, people can keep it after they pick up their medications and use it again and they can save up to 50% on their medications, if they don’t have insurance. Cards cover people and pets medications. Write: USA Drug Plan, 25 Hanover Rd., Bldg B, Ste. 150, Florham Park, NJ 07932. Website: http://www.unitedselfhelpfreedrugcard.org PROSTATE Prostatitis Foundation National Toll-free Helpline. 1-888-891-4200 Provides support, education, information and referrals to men with prostatitis. Website: http://www.prostatitis.org RADIATION Center for Disease Control and Prevention Helpline National Toll-free Helpline. 1800-232-4636 (Mon.-Fri., 8am-8pm EST) Provides information on emergency preparedness and response including bioterrorism, chemical and radiation emergencies, mass casualties, natural disasters, severe weather, recent outbreaks and incidence. Website: http://www.cdc.gov REHABILITATION Center for Assistive Technologies National Toll-free Helpline. 1-800-726-9119 (voice/TTY) Provides information on products, technology, resources and services for persons with disabilities.

National Rehabilitation Information Center National Toll-free Helpline. (BILINGUAL) 1-800-346-2742 (Mon.-Fri., 8:30am-5:30pm EST) Library and information center on 241

disability and rehabilitation of all types. Sponsored by U.S. Dept of Education. Website: http://www.naric.com ROSACEA National Rosacea Society National Toll-free Helpline. 1-888-662-5874 Information and educational materials on rosacea, a chronic, acne-like condition of the facial skin).

Website: http://www.rosacea.org SCOLIOSIS Scoliosis Association National Toll-free Helpline. 1-800-800-0669 Information for scoliosis patients and parents of children with scoliosis. Encourages school screening programs. Supports research. Website: http://www.scoliosis-assoc.org SPINAL CORD INJURY Christopher and Dana Reeve Foundation National Toll-free Helpline. (BILINGUAL) 1-800-539-7309 (Mon.-Fri., 9am-5pm EST) Information and referrals. Publishes a free book “Paralysis Resource� for consumers. Book is available in English or Spanish.

Website: http://www.christopherreeve.org E-mail: info@paralysis.org Foundation for Spinal Cord Injury Prevention National Toll-free Helpline. 1-800342-0330 Dedicated to the prevention, care and cure of spinal cord injuries through public awareness, education and funding research. Free counseling for victims and their families. Networking of patients and families. Website: http://fscip.org Paralyzed Veterans of America National Toll-free Helpline. 1-800-424-8200 (Mon.Fri., 9am-5pm EST) Information, referral and advocacy for disabled and paralyzed vets. Website: http://www.pva.org United Spinal Association National Toll-free Helpline. (BILINGUAL) 1-800-962-9629 (Mon.-Fri., 8:30am-5pm EST) Information, referral and peer support for spinal cord injured persons and their families. Website: http://www.spinalcord.org SEXUALLY TRANSMITTED DISEASE American Social Health Association National Toll-free Helpline. (BILINGUAL) 1-800227-8922 (Mon.-Fri., 8am-8pm EST) Provides information, materials and referrals concerning sexually transmitted infections. Specialists will answer questions via phone or e-mail on transmission, risk reduction, prevention, testing and treatment. Website: http://www.ashastd.org CDC National Prevention Information Network National Toll-free Helpline.

(BILINGUAL) 1-800-458-5231; TTY: 1-888-232-6348 (Mon.-Fri., 8am-8pm EST) Provides information on resources, educational materials, sexually transmitted diseases including AIDS/HIV, tuberculosis and communities at risk via touch tone 242

phone or Online. Many different services and publications offered. Website: http://www.cdcnpin.org STD TestExpress’ STD Testing Hotline National Toll-free Helpline. 1-888-506-1704 (7 days, 7am-11pm EST) HIPAA compliant, sexual health trained care advisors answering questions about getting tested for sexually transmitted diseases.

SURGERY American Society of Plastic Surgeons National Toll-free Helpline. 1-800-635-0635 Mon-Fri 8:30am-5pm (CST) Referrals to plastic surgeons. Information on particular plastic surgeons as to their particular qualifications. Website: http://www.plasticsurgery.org UROLOGIC DISEASE American Urological Association Foundation National Toll-free Helpline. 1-800828-7866 (Mon.-Fri., 8:30am-4:30pm EST) Educational information for patients and others interested about urological diseases. Website: http://www.urologyhealth.org Kidney and Urology Foundation of America National Toll-free Helpline..

(BILINGUAL) 1-800-633-6628 (Mon.-Fri., 9am-5pm EST) Dedicated to helping persons afflicted with any debilitating kidney, urologic and related diseases. Offers education, information, health fairs, grants, patient scholarships, physician referrals, fellowship and Pediatric Enrichment program. Website: http://www.kidneyurology.org National Institute of Diabetes & Digestive & Kidney Diseases National Toll-free Helpline. 1-800-891-5390 (kidney); 1-800-860-8747 (diabetes); 1-800-891-5389 (digestive diseases) (Mon.-Fri., 8:30am-5pm EST) Provides referrals and literature on a broad range of subjects concerning diabetes, digestive disorders, kidney disease, hematologic diseases, urologic disorders, metabolic and endocrine disorders.

VACCINATION Centers for Disease Control and Prevention National Toll-free Helpline.

(BILINGUAL) 1-800-232-4636 Provides information on health related topics, vaccinations, traveler’s health, grants, genetics, hoaxes, rumors and emergency responses.

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Crisis and Information Helpline National Toll-free Helpline. 1-800-433-7291 (24 hr.)

Provides crisis intervention, information and referral service to individuals seeking help.

Service is equipped with TDD (Devise for the Deaf). Callers may remain anonymous and receive help from trained telephone counselors.

Crisis Text Line TEXT: 741741 (24 hrs.) Support for teens and adults. Individuals who text, get an automatic reply welcoming them to the service and explaining the group rules. Messages are then routed to a trained counselor. Created and sponsored by DoSomething.org.

DEPRESSION Depression & Bipolar Support Alliance Information Line National Toll-free Helpline. 1-800-826-3632 Provides information on depression and bipolar disorder.

Crisis and Information Helpline National Toll-free Helpline. 1-800-433-7291 (24 hr.)

Provides crisis intervention, information and referral service to individuals seeking help.

Service is equipped with TDD (Devise for the Deaf). Callers may remain anonymous and receive help from trained telephone counselors.

National Institute of Mental Health Information Line National Toll-free Helpline..

(BILINGUAL) 1-800-421-4211 Offers free brochures on depression and anxiety.

Sponsored by National Institute of Mental Health.

EATING DISORDERS National Association for Males with Eating Disorders National Toll-free Helpline. 1877-780-0080 Provides confidential support for males affected by an eating disorder.

National Eating Disorders Association National Toll-free Helpline. 1-800-931-2237 (Mon.-Thurs. 9am-9pm; Fri. 9am-5pm EST) Provides information on local professional services and support groups nationwide for persons with eating disorders. Free literature and training conferences. Website: http://www.nationaleatingdisorders.org GENERAL | MEDICAL | EMOTIONAL SUPPORT DailyStrength National/International. Web Resource. Medical and emotional support community - physical health, mental health, support groups. Website: http://www.dailystrength.org Delphi Forums National/International. Web Resource. Online support community that has support groups, forums, chat and more. Website: http://www.delphiforums.com Experience Project National/International. Web Resource. Online support groups for many issues and life experiences. Website: http://www.experienceproject.com

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Meetup National/International. General. Web Resource. Used to plan offline (face-toface) meetings for people interested in a variety of support groups and other activities.

Website: http://www.meetup.com SupportGroups National/International. Web Resource. Online community of persons interested in forming support groups within this networking site. Website: http://www.supportgroups.com Tools to Life National/International. Web Resource. Support groups and group bonding with peers, friends and role models. Website: http://toolstolife.com Tribe.Net National/International. Web Resource. Online support community that has many categories. A place to connect with others “to find your community on Tribe”.

Website: http://www.tribe.net MENTAL HEALTH (GENERAL) Boy’s Town National Hotline National Toll-free Helpline. (BILINGUAL) 1-800-4483000 (24 hr.) Provides crisis intervention, information and referrals for boys and girls.

Free and confidential. Short-term crisis intervention. Suicide prevention. Works with children and families. Website: http://www.boystown.org E-mail: hotline@boystown.org Brain and Behavior Research Foundation National Toll-free Helpline. 1-800-8298289 (Mon.-Fri., 8am-5pm EST) Provides information on schizophrenia, depression and bipolar disorder. Has information on research being conducted on these disorders.

Newsletter, literature and brochures. Website: http://www.bbrfoundation.org Compeer, Inc. National Toll-free Helpline. 1-800-836-0475 (Mon.-Fri., 8:30am-5pm EST) Provides one-to-one volunteer supportive relationships to adults and youth in mental health recovery. Website: http://www.compeer.org Contact USA National. Web Resource. Offers online chat with an accredited chat specialist. Website: http://www.contact-usa.org and http://www.crisischat.org Email: contact-usa@sbcglobal.net Crisis and Information Helpline National Toll-free Helpline. 1-800-433-7291 (24 hr.)

Provides crisis intervention, information and referral service to individuals seeking help.

Service is equipped with TDD (Devise for the Deaf). Callers may remain anonymous and receive help from trained telephone counselors.

Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury. National. Web Resource. Serves US service members, their families and veterans by focusing on psychological health and traumatic brain injury prevention and care. Website also houses TRICARE, a health care program for active and retired military personnel. Website: http://www.dcoe.health.mil 245

Disaster Distress Helpline National Toll-free Helpline. 1-800-985-5990 | TTY: 1-800846-8517 Stress, anxiety, and other depression-line symptoms are common reactions after any natural or human caused disaster. Call this toll-free number to be connected to the nearest crisis center for information, support and counseling. Website: http://disasterdistress.samhsa.gov Double Trouble in Recovery National/International. Resource. Founded 1989.

Closed office in 2011. Some 12-step DTR groups still meet, as members help one another solve their common problems, to recover from both their addiction(s) and mental disorder. Free how-to’s on starting DTR groups at website: http://www.hazelden.org/web/go/dtr (below info on DTR “Basic Guide”). How-to’s for professionals helping clients start groups are for sale. To check on any local DTR groups, visit www.power2u.org - click “Consumer-Run Statewide Organizations” on left, and ask your state organization for local dual recovery groups.

Mental Health America National Toll-free Helpline. 1-800-969-6642 (Mon.-Fri., 9am5pm EST) Provides free information on over 200 mental health topics including bipolar disorder, depression, bereavement, post-traumatic stress disorder and warning signs of mental illness. Referrals to local mental health services. Distributes free national directory of local mental health associations and offers low-cost materials. Advocates to remove stigma of mental illness and for mental health benefits parity. Website: http://www.mentalhealthamerica.net National Institute of Mental Health Information Resource Center National Toll-free Helpline. 1-866-615-6464 (Mon.-Fri., 8:30am-5pm EST) Provides information and literature on anxiety, phobias, obsessive-compulsive disorder and depression. Leave name and mailing address and literature will be mailed to you. Website: http://www.nimh.nih.gov National Center for Post-Traumatic Stress Disorder National. Web Resource.

Founded in 1989. Serves to address the needs of veterans with military-related PTSD. The website provides educational and clinical resources concerning PTSD and other enduring consequences of traumatic stress. Website: http://www.ptsd.va.gov National Empowerment Center National Toll-free Helpline. 1-800-769-3728 Provides a list of “consumer-run statewide organizations” (click on it on left side of their website), which can be contacted for information on local consumer-run support groups and programs in your state. Also provides information and referral helpline, as well as literature, books, DVDs, lectures workshops, and other resources. NEC’s mission is “to carry a message of recovery, empowerment, hope and healing to people with lived experiences with mental health issues, trauma and extreme states.” Website: http://www.power2u.org PsychCentral National/International. Web Resource. Support community that has support groups, blogs, news, research and more which covers a variety of behavioral health issues. Website: http://www.psychcentral.com 246

TARA National Toll-free Helpline. 1-888-482-7227 (Mon.-Fri., Noon-5pm EST) Education and advocacy organization. Provides information on borderline personality to families, consumers and providers. Referrals to clinicians, treatment programs, selfhelp groups, BPD Journal, speakers’ bureau, professional conferences and advocacy.

Website: http://www.tara4bpd.org PSYCHIATRIST | PSYCHOLOGIST | THERAPIST American Psychiatric Association Toll-free Helpline. 1-888-357-7924 Information and referrals to psychiatrists in one’s local area. Website: http://www.psych.org American Psychological Association National Toll-free Helpline. 1-800-964-2000 Information and referrals to psychologists in one’s local area. Website: http://www.apa.org E-mail: helping@apa.org National Association of Social Workers National Toll-free Helpline. 1-800-638-8799 Information and referrals to social workers in one’s local area. Website: http://www.socialworkers.org SELF-ABUSE SAFE (Self-Abuse Finally Ends) Alternative Info Line National Toll-free Helpline. 1800-366-8288 (Mon.-Fri., 8am-4pm CST) Provides recorded information on dealing with self-abuse, self-mutilation and treatment options. Website: http://www.selfinjury.com SUICIDE PREVENTION Contact - Suicide Prevention Helpline National Toll-free Helpline. (BILINGUAL) 1800-784-2433 or 1-800-SUICIDE; (Spanish) 1-877-784-2432 National suicide prevention line that routes callers to a local or regional suicide crisis hotline.

National Suicide Prevention Lifeline National Toll-free Helpline. 1-800-273-8255; TTY: 1-800-799-4889 (24hrs) Confidential suicide prevention hotline available to anyone in suicidal crisis or emotional distress. Calls are routed to the nearest crisis center in the national network of more than 150 crisis centers. Website: http://www.suicidepreventionlifeline.org US Department of Defense Suicide Outreach National/International. Web Resource.

Website features suicide support hotlines, assessments and treatment options, professional resources and forums, and various multimedia tools designed to provide information that meets service members’ specific needs. This site supports all members of the US military - active and reserve, veterans, families, friends and providers. Website: http://www.suicideoutreach.org TRAUMA & POST TRAUMATIC STRESS DISORDER 247

American Red Cross National Toll-free Helpline. 1-800-733-2767 Provides disaster relief, emergency, health, safety and community services.

American Trauma Society National Toll-free Helpline. 1-800-556-7890 (Mon.-Fri., 8:30am-4pm EST) Provides referrals and educational materials on the prevention of physical traumas. Website: http://www.amtrauma.org Center for Disease Control & Prevention Helpline National Toll-free Helpline. 1800-232-4636 (Mon.-Fri., 8am-8pm EST); TTY: 1-888-232-6348 Provides information on emergency preparedness and response including bioterrorism, chemical and radiation emergencies, mass casualties, natural disasters, severe weather, recent outbreaks and incidence. Website: http://www.cdc.gov Disaster Distress Helpline National Toll-free Helpline. 1-800-985-5900 | TTY: 1-800846-8517 Stress, anxiety, and other depression-line symptoms are common reactions after any natural or human caused disaster. Call this toll-free number to be connected to the nearest crisis center for information, support and counseling. Website: http://disasterstress.samhsa.gov PTSD Foundation of America National Toll-free Helpline. 1-877-717-7873 Provides hope and healing for the unseen wounds of war.

Think First National Injury Prevention Foundation National Toll-free Helpline. 1800-844-6556 (Mon.-Fri., 8:30am-5pm CST) Aims to prevent brain, spinal cord and other traumatic injuries through education and training. Information for children and teens. Website: http://www.thinkfirst.org

MISCELLENEOUS

ACCIDENT VICTIMS Truck Safety Coalition National/International. Web Resource. Dedicated to providing immediate compassionate support to truck crash survivors and families of truck crash victims. Referrals to grief counseling, medical services and truck crash experts. Phone support, conferences, advocacy, First Response Program and survivors network.

Website: http://www.trucksafety.org AGING | SENIOR CITIZENS American Association of Retired Persons (AARP) National Toll-free Helpline. 1888-687-2277; 1-877-434-7598 - toll-free TTY; 1-877-342-2277 - Spanish (Mon.-Fri. 7am-11pm EST) Provides resources for retired persons. Website: http://www.aarp.org E-mail: member@aarp.org 248

Eldercare Locator National Toll-free Helpline. 1-800-677-1116 (Mon.-Fri., 9am-8pm EST) Provides information for families and friends of the elderly (ages 60+). Referrals to area agencies on aging for information on insurance, Medicaid, taxes and respite care. Information for disabled also provided on these subjects. Website: http://www.eldercare.gov National Institute on Aging National Toll-free Helpline. (BILINGUAL) 1-800-2222225; TTY: 1-800-222-4225 (Mon.-Fri., 8:30am-5pm EST) Provides publications on topics of interest to older adults, doctors, nurses, social activities directors, health educators and the public. Sponsored by federal government. Website: http://www.nia.nih.gov Services & Advocacy for GLBT Elders (SAGE) National/International. Web Resource. Resources for LGBT senior citizens. Write: SAGE, 305 Seventh Ave., 15th floor, New York, NY 10001. Call 212-741-2247; Fax: 212-366-1947. Website: http://www.sageusa.org E-mail: info@sageusa.org Today’s Caregiver National Toll-free Helpline. 1-800-829-2734 Provides support and information to enable caregivers to cope and make the best healthcare decisions for their clients, family and friends. Offers print and digital magazine, newsletter, online forum, conferences and information. For support group listings by state, go to the website and click on the “Local Resources” tab (Note: be sure to confirm meeting information by phone or e-mail before attending). Website: http://www.caregiver.com E-mail: info@caregiver.com Tubman ElderCare Rights Center National Toll-free Helpline. 1-800-893-4055 (9-5 CST) Promotes the principles of justice and dignity in the long-term care system through education, advocacy and action. Website: http://www.eldercarerights.org United Neighborhood Centers of America National. Web Resource. Provides information in the following areas: childcare and early childhood development, youth development programs (including Charter and Alternative Schools), basic assistance (food, shelter and clothing), education and training for adults, and programs for older Americans. Website: http://www.unca.org/about-us/who-we-are/our-members BUSINESS MyMoney National Toll-free Helpline. 1-888-696-6639 (Mon.-Fri. 8am-8pm EST) Provides information on starting one’s own business. (Search for “buying a business”) Website: http://www.mymoney.gov SCORE (Service Corps of Retired Executives) National Toll-free Helpline. 1-800634-0245 (Mon.-Fri., 8:30am-5pm EST) Provides counseling for starting or maintaining businesses. Referrals to local chapters. Website: http://www.score.org

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U.S. Small Business Administration National Toll-free Helpline. (BILINGUAL) 1-800827-5722 (Mon.-Fri., 9am-5pm EST) Provides information, training and literature on starting and financing small businesses. Website: http://www.sba.gov/about-sba CHARITY | SERVICE ORGANIZATION Goodwill Industries National Toll-free Helpline. 1-800-741-0186 Provides employment and training services for people with disabilities and other disadvantaging conditions such as welfare dependency, illiteracy, criminal history and homeless.

Website: http://www.goodwill.org CONSUMERS | CREDIT Annual Credit Report 1-877-322-8228 National Toll-free Helpline.. Provides one free report per year from each of the three major credit bureaus. Website: http://www.annualcreditreport.com Consumer Credit Counseling Services National Toll-free Helpline. (BILINGUAL) 1800-388-2227 With touch-tone phone, callers can find out about credit counseling services in their local areas. Sponsored by the National Foundation for Consumer Credit. Website: http://www.nfcc.org CREDIT COUNSELING FDA Consumer Affairs National Toll-free Helpline. 1-888-463-6332 Information on any FDA-regulated product (food and drugs). Has information on rare illnesses, starting businesses, freedom of information act, health and medical issues. Free literature. Referrals to toll-free numbers. Assists in emergency situations. Website: http://www.fda.gov National Do Not Call Registry National Toll-free Helpline. 1-888-382-1222 An opportunity to limit the telemarketing calls that are received. Created to offer consumers a choice regarding telemarketing calls. Website: http://www.donotcall.gov Opt Out National Toll-free Helpline. (BILINGUAL) 1-888-567-8688 Organization that removes your name and address from all mailing lists offered by the main consumer credit reporting agencies (Trans Union, Experian, Equifax and Innovis) which advertise and send out new charge card offers. Website: http://opt-out.cdt.org U.S. Consumer Product Safety Commission National Toll-free Helpline.

(BILINGUAL) 1-800-638-2772 Computer operated recorded information on product safety. Takes reports on unsafe products.

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Consumer Response Center National Toll-free Helpline. (BILINGUAL) 1-877-3824357 Assistance for people who are victims of fraud. Complaints are shared with law enforcement agencies. Does not resolve individual disputes. Sponsored by Federal Trade Commission.

Identity Theft (Federal Trade Commission) National. Web Resource. Provides help for those who are, or believe they are, victims of identity theft. (Click “Identity Theft”) Website: http://www.ftc.gov Identity Theft Resource Center (ITRC) formerly V.O.I.C.E.S (Victims of Identity Crimes Extended Services) National Toll-free Helpline. 1-888-400-5530 (Mon.-Fri. 7:30am-4:30pm Pacific Time) Provides free consumer and victim support, public education and advice to victims of identity theft. Website: http://www.idtheftcenter.org E-mail: itrc@idtheftcenter.org Juvenile Justice Clearinghouse National Toll-free Helpline. 1-800-851-3420 (Mon.Fri., 10am-6pm EST) Information and referrals regarding juvenile justice programs and Department of Justice. Website: http://www.ncjrs.gov National Criminal Justice Reference Service National Toll-free Helpline. 1-800-8513420 (Mon.-Fri., 10am-6:00pm EST) Provides information on all aspects of the criminal justice system and support for victims. Website: http://www.ncjrs.gov National Human Trafficking Resource Center National Toll-free Helpline.

(MULTILINGUAL) 1-888-373-7888 (24 hrs.) or text BeFree (233733). Provides opportunity to report trafficking crimes or get help. “Human trafficking” is a form of slavery and involuntary servitude - examples include sexual exploitation, sweatshop workers, exploitation of agricultural workers and individuals working as domestic servants. Website: http://www.traffickingresourcecenter.org National Institute of Corrections National Toll-free Helpline. 1-800-995-6423 (Mon.Fri., 8am-5pm EST) Provides information and technical assistance regarding those diagnosed with a mental illness in prison. Website: http://nicic.gov We Tip Hotline National Toll-free Helpline. (BILINGUAL) 1-800-782-7463 Takes reports on crimes or felonies.

DISCRIMINATION Office for Civil Rights National Toll-free Helpline. (BILINGUAL) 1-800-368-1019 (Mon.-Fri., 8:30am-5:30pm EST) Refers people who feel they have been discriminated against. Sponsored by the Dept. of Health and Human Services. Website: http://www.hhs.gov/ocr EDUCATION

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Federal Student Aid Information Center National Toll-free Helpline. 1-800-433-3243 Information available regarding information on student aid. Sponsored by U.S. Dept. of Education. Website: http://www.federalstudentaid.ed.gov Financial Aid Made Easy National/International. Web Resource. Provides a comprehensive look at financial aid. Includes as many online resources for readers interested in exploring their options. Website: http://www.bestcollegesOnline.com/financial-aid-made-easy Goodwill Industries National Toll-free Helpline. 1-800-741-0186 Provides employment and training services for people with disabilities and other disadvantaging conditions such as welfare dependency, illiteracy, criminal history and homeless.

EMPLOYMENT | UNEMPLOYMENT Job Survival Helpline National Toll-free Helpline. 1-800-522-0925 Helpline for women to get referrals, answer questions and support for improving policies and conditions on the job. Website: http://www.9to5.org E-mail: 9to5@9to5.org LinkedIn National/International. Web Resource. Online community with a focus on business and professional networking. Website: http://www.linkedin.com Joining Forces: Veterans Jobs Bank Website lists several websites that specialize in connecting unemployed veterans to job opportunities and training. Website: http://www.whitehouse.gov/joiningforces/resources US Department of Labor National Toll-free Helpline. 1-866-487-2365; 1-877-8895627 (TTY) Provides information on unemployment insurance information and job seeking information. Website: http://www.dol.gov ENERGY | UTILITIES Center for Disease Control & Prevention Helpline National Toll-free Helpline. 1800-232-4636 (Mon.-Fri., 8am-8pm EST); TTY: 1-888-232-6348 Provides information on emergency preparedness and response including bioterrorism, chemical and radiation emergencies, mass casualties, natural disasters, severe weather, recent outbreaks and incidence. Website: http://www.cdc.gov Energy Efficiency and Renewable Energy Clearinghouse National. Web Resource.

Free information on energy efficiency and renewable energy. Assists consumers who need information on energy efficiency and renewable energy (transportation, homes).

Provides referrals to appropriate organizations. Sponsored by the Dept. of Energy.

Website: http://www.eere.energy.gov EPA (Environmental Protection Agency) Safe Drinking Water National Toll-free Helpline. (BILINGUAL) 1-800-426-4791 (Mon.-Fri., 10am-4pm EST) Provides information on safe drinking water and policy regulations on a variety of environmental concerns. Website: http://www.epa.gov/safewater 252

National Assistance Referral (NEAR) National Toll-free Helpline. 1-866-674-6327 Provides information on options and directs to local Low Income Home Energy Assistance Programs (LIHEAP).

National Lead Information Center National Toll-free Helpline. (BILINGUAL) 1-800424-5323 Provides information on lead-based paint for the home and safe work practices for renovating. Distributes EPA literature. Website: http://www.epa.gov/lead FOOD HANDLING | FOOD CO-OP Center for Food Safety and Applied Nutrition National Toll-free Helpline. 1-888-7233366 (Mon.-Fri., 10am-4pm EST) Provides information on food safety, cosmetics, nutrition, dietary supplements, food additives, food labeling and food biotechnology.

Sponsored by FDA. Website: http://www.cfsan.fda.gov Feeding America National Toll-free Helpline. 1-800-771-2303 Provides hunger relief through a network of over 200 food banks and food-rescue programs. Website: http://www.feedingamerica.org Meat and Poultry Hotline National Toll-free Helpline. (BILINGUAL) 1-800-535-4555 or 1-888-674-6854 (Mon.-Fri., 10am-4pm EST) Answers questions on the proper handling of food. Helps individuals to understand labels on meat and poultry. Will answer questions about safe handling procedures. Sponsored by US Dept. of Agriculture. Website: http://www.fsis.usda.gov FOOD PANTRIES | SOUP KITCHENS | NUTRITION Homeless To Independence National. Web Resource. Connects homeless persons to employment and affordable housing resources. List of homeless shelters and food nationwide. Information & referral to resources for healthcare, furniture, clothing, freebies and more. Website: http://www.homelesstoindependence.org GAY|LESBIAN|BISEXUAL|TRANSGENDER|INTERSEX|ASEXUAL (LGBTQIA) GLBT National Hotline National Toll-free Helpline. 1-888-843-4564 Provides information and referrals for gays, lesbians, transgender and persons with questions about their sexuality. Information and referral and peer counseling. Website: http://www.glnh.org E-mail: info@glbtnationalhelpcenter.org GLBT National Youth Talkline National Toll-free Helpline. 1-800-246-7743 (5pm-9pm PST) Provides free and confidential telephone and internet peer-counseling, information and local resources for gay, lesbian, bisexual, transgender and questioning youth up to age 25. Website: http://www.glbthotline.org The Trevor Project National Toll-free Helpline. 1-866-488-7386 or 1-866-4-U-Trevor (24 hr.) Confidential, non-judgmental helpline for gay, lesbian, bisexual and 253

transgender youth 13-24. Website has a chatroom with live help (Fri., 4pm-12am EST), and a “Dear Trevor� section where youth can ask questions concerning sexual orientation or gender identity issues which will be answered. Also has information for homeless youth. Website: http://www.thetrevorproject.org GRANTS | FUNDING Foundation Center Customer Service National Toll-free Helpline. 1-800-424-9836 (Mon.-Fri., 8am-7pm EST) Provides information on grant providers and funders. Grant writing for non-profit projects. Offers course on proposal writing. Free library. Website: http://www.foundationcenter.org HOUSING Homeless To Independence National. Web Resource. Connects homeless persons to employment and affordable housing resources. List of homeless shelters and food nationwide. Information & referral to resources for healthcare, furniture, clothing, freebies and more. Website: http://www.homelesstoindependence.org Hope Hotline Toll-free Helpline. (BILINGUAL) 1-888-995-4673 (24 hr.) Offers free, confidential help and assistance to homeowners at risk of foreclosure.

Hope Now Alliance National Toll-free Helpline. (BILINGUAL) 1-888-995-4673 Provides free housing counseling in order to give struggling homeowners relief from overwhelming mortgage payments. Private partnership organized by the federal government to help homeowners who are struggling to pay the mortgage find the right solution in order to avoid losing their homes.

National Call Center for Homeless Veterans National Toll-free Helpline. 1-877-4243838 (24 hr.) Trained VA counselors assist homeless veterans or at-risk for homelessness veterans and their families with information about local VA homeless programs and mental health services available. All calls are free and confidential.

Online chatroom. Website: http://www.veteranscrisisline.net NeighborWorks America National. Provides information on affordable housing.

Website: http://www.nw.org SocialServe National Toll-free Helpline. 1-877-428-8844 Provides information on affordable housing. Website: http://www.socialserve.com US Department of Housing and Urban Development National. Web Resource.

Provides information on tenants rights, rental assistance and avoiding foreclosure.

Website: http://portal.hud.gov IMMIGRANT US Citizenship and Immigration Services National Toll-free Helpline. (BILINGUAL) 1-800-375-5283; TTY: 1-800-767-1833 (Mon.-Fri., 8am-6pm) Comprehensive 254

information for immigrants including naturalization processes, adjustment of status for permanent residency and travel documents. Information on international services, employment authorization and immigration medical examinations. Website: http://www.uscis.gov INSURANCE The Health Insurance Marketplace Toll-free Helpline. 1-800-318-2596; TTY: 1-855889-4325 (24 hrs.) Connects consumers with health insurers who participate in the Health Insurance Marketplace. Provides accurate information on the Affordable Care Act (ACA) of 2010. Website: https://www.healthcare.gov Hurricane Insurance Information Center National Toll-free Helpline. 1-800-942-4242 (24 hr.) Provides general information on hurricane insurance. Website: http://www.diasterinformation.org LEGISLATION Project Vote Smart National Toll-free Helpline. 1-888-868-3762 (Mon.-Fri., 8am-5pm MST) Non-partisan information about all elected officials and candidates for federal, state and local gubernatorial offices. Website: http://www.votesmart.org U.S. Government Federal Information Center National Toll-free Helpline.

(BILINGUAL) 1-800-688-9889 Information about federal government programs and agencies including patents, taxes, jobs, social security, passports, visas, dept. of states, veteran affairs, rules and regulations. Website: http://www.usa.gov MILITARY | VETERANS Army Wounded Soldier and Family Hotline National Toll-free Helpline. 1-800-9848523 (24 hr.) Offers wounded and injured soldiers and family members a way to seek help to resolve medical issues and to provide an information channel of soldier medically related issues directed to senior Army leadership so they can improve how Army serves the medical needs of soldiers and their families.

Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury. National. Web Resource. Serves US service members, their families and veterans by focusing on psychological health and traumatic brain injury prevention and care. Website also houses TRICARE, a health care program for active and retired military personnel. Website: http://www.dcoe.health.mil Department of Veterans Affairs National Toll-free Helpline. 1-800-827-1000 (Mon.Fri., 8am-4pm EST) Provides comprehensive information on available programs and services for veterans including pensions, vocational rehab, survivor’s benefits, presidential memorial certificates, education programs and home loan programs for dependents. Special programs for disabled, homeless, minority and women veterans.

Website: http://www.va.gov 255

Disabled American Veterans National Toll-free Helpline. 1-877-426-2838 (8:30am4:30pm EST) Provides free, professional assistance to veterans and their families in obtaining benefits and services earned through military service and provided by the department of Veteran Affairs and other agencies of the government. Guidelines for developing chapters. Website: http://www.dav.org Disabled Veterans Job Assistance Line National Toll-free Helpline. 1-800-378-4559 ext. 2 Provides assistance and referrals for returning disabled service members, recently medically retired service members and spouses of disabled service members.

Supports veterans of Operation Iraqi Freedom, Operation Enduring Freedom, as well as all disabled veterans of other conflicts, campaigns or wars and disabled children.

Grace After Fire National Toll-free Helpline. 1-800-362-6477 Provides the means for women veterans to gain self-knowledge and self-renewal. Offers teaching, developing and listening programs to women veterans and their needs upon returning home.

Committed to assisting women veterans in their transition back into family life achievements in the workplace, and pursuit of happiness. Website: http://www.graceafterfire.org Iraq and Afghanistan Veterans of America National. Web Resource. Founded 2004.

Dedicated to the troops and veterans of Iraq and Afghanistan wars, and their civilian supporters. Advocates for education benefits and employment. Helps to prevent suicide among service members. Website: http://www.iava.org Joining Forces: Veterans Jobs Bank National. Web Resource. Website lists several websites that specialize in connecting unemployed veterans to job opportunities and training. Website: http://www.whitehouse.gov/joiningforces/resources Military OneSource National Toll-free Helpline. 1-800-342-9647 Provides service to active military members (all branches) and their families with assistance for a broad range of concerns including money management, spouse employment and education, parenting and child care, relocation, deployment, reunion, and concerns of families with special-needs members. Website: http://www.militaryonesource.mil Military Pathways (formerly the Mental Health Self-Assessment Program).

National. Web Resource. Offers service personnel and their families the opportunity to take anonymous, mental health and alcohol use self-assessments online, via the phone and through special events held at installations. The self-assessments address post-traumatic stress disorder (PSTD), depression, generalized anxiety disorder, alcohol use and bipolar disorder. Website: http://www.mentalhealthscreening.org/military/index.aspx National Call Center for Homeless Veterans National Toll-free Helpline. 1-877-4243838 (24 hr.) Trained VA counselors assist homeless veterans or at-risk for homelessness veterans and their families with information about local VA homeless 256

programs and mental health services available. All calls are free and confidential.

Online chatroom. Website: http://www.veteranscrisisline.net National Center for Post-Traumatic Stress Disorder National. Web Resource.

Founded in 1989. Serves to address the needs of veterans with military-related PTSD. The website provides educational and clinical resources concerning PTSD and other enduring consequences of traumatic stress. Website: http://www.ptsd.va.gov Paralyzed Veterans of America National Toll-free Helpline. 1-800-424-8200 (Mon.Fri., 9am-5pm EST) Information, referral and advocacy for disabled and paralyzed vets. Website: http://www.pva.org PTSD Foundation of America National Toll-free Helpline. 1-877-717-7873 Provides hope and healing for the unseen wounds of war.

US Department of Defense Suicide Outreach National. Web Resource. Website features suicide support hotlines, assessments and treatment options, professional resources and forums, and various multimedia tools designed to provide information that meets service members’ specific needs. This site supports all members of the US military - active and reserve, veterans, families, friends and providers. Website: http://www.suicideoutreach.org VA Special Issues Helpline National Toll-free Helpline. 1-800-749-8387 (7am-7pm CST) Refers Gulf war veterans and veterans affected by Agent Orange with medical problems to local Gulf war and Agent Orange coordinators at local VA medical centers.

Other special issues addressed. Website: http://www.va.gov VA’s Family Caregiver Support Line National Toll-free Helpline. 1-855-260-3274 (Mon.-Fri., 8am-11pm EST) U.S. Veterans Administration helpline for those who are caring for any military veteran, who was ever enrolled in any VA program for their disability or chronic illness. Provides information on any local VA family caregiver support groups, as well as related VA services and benefits. Website: http://www.caregiver.va.gov VA’s Family Caregiver Support Line Toll-free Helpline. 1-855-260-3274 (Mon.-Fri., 8am-11pm EST) U.S. Veterans Administration helpline for those who are caring for any military veteran, who was ever enrolled in any VA program for their disability or chronic illness. Provides information on any local VA family caregiver support groups, as well as related VA services and benefits. Website: http://www.caregiver.va.gov Veteran Combat Call Center National Toll-free Helpline. 1-877-927-8387 (877-WARVETS) to talk to another combat veteran. (24 hrs.)

Veterans Affairs Suicide Hotline National Toll-free Helpline. 1-800-273-8255 (when connected, press 1; 24 hr.) Suicide prevention helpline for veterans with emotional

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crisis. Staffed by mental health professionals working with local VA mental health providers to help callers. Website: http://www.suicidepreventionlifeline.org Veterans Consortium Pro Bono Program National Toll-free Helpline. 1-888-8387727 Provides pro bono attorneys to financially qualified veterans with meritorious claims when their benefits appeals reach the US Court of Appeals for Veterans Claims.

Website: http://www.vetsprobono.org Veterans History Project National. Web Resource. Healing through telling ones story.

Project relies on volunteers to collect and preserve stories of wartime service. Users can search the collection by name, service location, rank, and medals, and add their own stories to the permanent collection, including audio and video. Learn more about how to contribute to this project. Website: http://www.loc.gov/vets Veterans of Foreign Wars National. Web Resource. Serves as a voice for veterans and a catalyst for change in improving veterans’ benefits through community service programs and special projects. Website: http://www.vfw.org Veterans of the Vietnam War, Inc. (All Wars) National Toll-free Helpline. 1-800-8438626 (Mon.-Fri., 8am-4pm EST) Membership organization open to all veterans and their supporters. Educates public about post-traumatic stress disorder, veteran health issues, Agent Orange and POW/MIA issues. Maintains a Find-a-Vet locator service, publishes newsletter, works with homeless veterans and incarcerated vets. Website: http://www.vvnw.org Vets 4 Warriors National Toll-free Helpline. 1-855-838-8255 (24 hrs) Confidential peer support for active and reserve/retired military, staffed by men and women who have served in the military and “understand.” Information on legal, housing, medical and other needs. Family of military may also call for help. Maintains an online resource library (go to “Resources” tab at the top of their webpage). Website: www.vets4warriors.com E-mail: contactus@vets4warriors.com PESTICIDES National Pesticide Information Center National Toll-free Helpline. 1-800-858-7378 (Mon.-Fri., 7:30am-3:30pm PST) Information on most aspects of pesticides. Includes information related to antimicrobials, herbicides, insecticides, disinfectants and other chemicals designed to kill micro-organisms. Brochures available. Sponsored by EPA. Website: http://www.npic.orst.edu POLICE OFFICERS Cop2Cop Toll-free Helpline. 1-866-267-2267 (24 hr.) Serves active and retired policemen and their families. Retired officers and mental health professionals offer callers support. Provides support and referrals for counseling, mental health, substance abuse, partial care and inpatient treatment. Website http://ubhc.umdnj.edu/cop2cop/main.htm 258

PROSTITUTION | SEX INDUSTRY HIPS Hotline National Toll-free Helpline. 1-800-676-4477 (11am-5pm) Provides crisis peer counseling and support for persons involved in, or affected by, the sex industry.

Counseling and information provided for sex workers and their families in a nonjudgmental, supportive atmosphere. Website: http://www.hips.org RELIGION | CULTS RECOVERY Fundamentalists Anonymous Web Resource. Provides information and the 12-steps for those who have chosen to walk away from biblical fundamentalism. Website: http://savedfromfundamentalism.com; http://www.secular-sobrietychat.blogspot.com/2010/05/12-steps-of-fundamentalists-anonymous.html; a fledgling Fundamentalists Anonymous group on Facebook: https://www.facebook.com/groups/324202841103339 and http://www.angelfire.com/ny5/dvera/CoEvan/exFundyXian.html RUNAWAYS National Runaway Safe Line National Toll-free Helpline. 1-800-786-2929 (24 hr.)

Provides crisis intervention, information and referrals for runaways regarding shelter, counseling, food pantries and transportation. Suicide and crisis counseling. Greyhound bus tickets available for qualifying kids. Parents are welcome to call for assistance.

Website: http://www.1800runaway.org RURAL ISSUES Rural Information Center National Toll-free Helpline. 1-800-633-7701 (Mon.-Fri., 8:30am-4:30pm EST) Information on rural issues. Provides brief database searches for free. Website: http://ric.nal.usda.gov SOCIAL SECURITY NJ WINS (Work Incentive Network Support) Toll-free Helpline. 1-866-946-7465 (Mon.-Fri., 8am-5pm) Enables social security administration beneficiaries with disabilities to make informed choices about work and assist them in exploring work incentives that are available. Website: http://www.njwins.org Social Security National Toll-free Helpline. 1-800-772-1213 (24 hr.) Provides information on all aspects of social security, supplemental security income and Medicare. Can speak with a person or use touch-tone phone to hear messages.

Website: http://www.socialsecurity.gov TAX INFORMATION

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IRS Federal Tax Information National Toll-free Helpline. 1-800-829-1040 (24 hr.)

Information regarding federal tax questions, problems and refund information (30 day waiting period for written requests). Website: http://www.irs.gov TRANSPORTATION Air Ambulance Central National Toll-free Helpline. (24 hr.) Will fly patients from anywhere for needed medical services.

Air Charity Network National Toll-free Helpline. 1-877-621-7177 Provides referrals to 1200 volunteer pilots who will fly needy patients for medical care. Website: http://www.aircharitynetwork.org American Red Cross National Toll-free Helpline. 1-800-733-2767 Provides disaster relief, emergency, health, safety and community services.

Miracle Flights for Kids National Toll-free Helpline. 1-800-359-1711 (Mon.-Thurs., 7:30am-6pm PST) Arranges airplane travel for children and adults with healthcare problems. Need doctors note and 16 days advance notice. Website: http://www.miracleflights.org National Patient Travel Center National Toll-free Helpline. 1-800-296-1217 (Mon.Fri., 9am-5pm EST) Information and referral for persons who need cost effective transportation for specialized treatment after an illness or accident. Website: http://patienttravel.org TSA Cares National Toll-free Helpline. 1-855-787-2227 (questions prior to travel); 1866-289-9673 (general questions, complaints) Mon.-Fri. 9am-9pm EST (except federal holidays). Assists travelers with disabilities and medical conditions. Website: http://www.tsa.gov E-mail tsa-contactcenter@dhs.gov WELFARE Children’s Wish Foundation International National Toll-free Helpline. 1-800-3239474 (Mon.-Fri., 8:30am-5pm EST) Grants wishes to terminally ill children under the age of 18. Website: http://www.childrenswish.org Dream Factory National Toll-free Helpline. 1-800-456-7556 (Mon.-Fri., 8am-4pm EST) Grants dreams for children with a life threatening or critical chronic illness. Website: http://www.dreamfactoryinc.org Give Kids the World Foundation National Toll-free Helpline. 1-800-995-5437 (24 hr.)

Offers a 70-acre, non-profit resort for use by children with life-threatening illnesses whose one wish is to visit Central Florida’s best-loved attractions. Website: http://www.gktw.org

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Goodwill Industries National Toll-free Helpline. 1-800-741-0186 Provides employment and training services for people with disabilities and other disadvantaging conditions such as welfare dependency, illiteracy, criminal history and homeless. Wish Granting for Ill Children Helpline Make-A-Wish Foundation National Toll-free Helpline. 1-800-722-9474 (Mon.-Fri., 7am-4pm PST) Grants wishes to children with serious illnesses or life threatening medical conditions. Website: http://www.wish.org WOMEN’S ISSUES National Women’s Health Information Center (BILINGUAL) 1-800-994-9662 (Mon.Fri., 9am-6pm EST) Provides information and referrals for all women’s health questions and any questions on breastfeeding. Website: http://www.health.gov Service Woman’s Action Network National Toll-free Helpline. 1-888-729-2089 Helpline for legal and social referrals.

YOUTH | STUDENTS Boy’s Town National Hotline National Toll-free Helpline. (BILINGUAL) 1-800-4483000 (24 hr.) Provides crisis intervention, information and referrals for boys and girls.

Free and confidential. Short-term crisis intervention. Works with children and families.

Website: http://www.boystown.org E-mail: hotline@boystown.org Crisis Text Line TEXT: 741741 (24 hrs.) Support for teens and adults. Individuals who text, get an automatic reply welcoming them to the service and explaining the group rules. Messages are then routed to a trained counselor. Created and sponsored by DoSomething.org.

Children’s Defense Fund National Toll-free Helpline. 1-800-233-1200 (Mon.-Fri., 9am-8pm CST) Advocacy for children who cannot speak for themselves. Emphasis on low income and disabled children. Develops prevention programs to help children.

Training seminars to develop Confident Kids Support Groups. Website: http://www.childrensdefense.org National Teen Dating Abuse Helpline National Toll-free Helpline. 1-866-331-9474; TTY: 1-866-331-8453 (24 hrs.) Peer-run helpline that provides one-on-one support, information and advocacy for teens and young adults ages 13-25 involved in abusive dating relationships as well as concerned others. Website: http://www.loveisrespect.org E-mail: contact@ndah.org The Trevor Project National Toll-free Helpline. 1-866-488-7386 or 1-866-4-U-Trevor (24 hr.) Confidential, non-judgmental helpline for gay, lesbian, bisexual and transgender youth 13-24, their families and friends. Website has a chatroom with live help (Fri., 4pm-12am EST), and a “Dear Trevor” section where youth can ask questions concerning sexual orientation or gender identity issues which will be 261

answered. Also provides information for homeless youth. Website: http://www.thetrevorproject.org United Neighborhood Centers of America National. Web Resource. Provides information in the following areas: childcare and early childhood development, youth development programs (including Charter and Alternative Schools), basic assistance (food, shelter and clothing), education and training for adults, and programs for older Americans. Website: http://www.unca.org/about-us/who-we-are/our-members

TABLE OF CONTENTSFOR SELF–HELP GROUP CLEARINGHOUSES WORLDWIDE

Australia Canada European Union Japan Mexico Norway Switzerland United States AUSTRALIA

Self-Help Queensland, Inc. * Queensland. Founded 1983. Provides information on local self-help groups. Helps persons to start and maintain groups. Write: Self-Help Queensland, P.O. Box 353, Sunnybank, Queensland, Australia 4109. Call 07-333446919. Website: http://www.selfhelpqld.org.au E-mail: selfhelp@gil.com.au CANADA

BRITISH COLUMBIA PeerNetBC * (Vancouver) Dedicated to promoting peer support approaches that build the capacity of individuals and communities to become healthy, responsive, and selfdetermining. Provides capacity-building facilitation workshops, consultations, information and referral, outreach and community development, bi-annual “Directory of Self Help and Peer Support Groups in the Lower Mainland,” central resource centre, and the Kinex Youth Initiative. Write: PeerNetBC, 303-411 Dunsmuir St., Vancouver, BC, V6B 1X4 Canada. Call 604-733-6186; Fax: 604-730-1015. Website: http://www.peernetbc.com E-mail: info@peernetbc.com 262

NEW BRUNSWICK Community Information Centre * (New Brunswick) Provides information and referrals on community services. Publishes a variety of human service directories. Write: Community Information Line, c/o Human Development Council, Box 6125 Station A, Saint John, New Brunswick E2L 4R6 Canada. Call 506-633-4636. Website: http://humandevelopmentcouncil.nb.ca (to find support group listing on website: from the website home page click “community info” tab on top of page; next click “search our online community services database”; then type in “support groups” in the “find” search box) or http://www.nbinfo.ca

NOVA SCOTIA The Self-Help Connection * (Dartmouth) Referrals to provincial self-help groups.

Assistance to new and existing groups. Publishes directory of local self-help groups.

Write: The Self-Help Connection, 63 King St., Dartmouth, Nova Scotia B2Y 2R7, Canada. Call 1-866-765-6639 or 902-404-7800; Fax: 902-404-3205. Website: http://www.selfhelpconnection.ca E-mail: selfhelp@eastlink.ca

ONTARIO Self-Help Resource Center * (Greater Toronto area) Founded 1987. Referrals to local peer support groups. Fee-For-Service Workshops to start new and also help existing groups. Directory of peer support groups in the Greater Toronto Area. Information on peer support affiliates in Ontario. Write: Self-Help Resource Center, 40 St. Clair Ave., Suite 307, Toronto, Ontario M4T 1M9 Canada. Call 416-487-4355 (Toronto area) or 1888-283-8806 (in Ontario outside Toronto); Fax: 416-487-0344; Website: http://www.selfhelp.on.ca E-mail: outreach@selfhelp.on.ca Oxford Self-Help Network * (Oxford County) Referrals to local mental health self-help groups. Publishes directory of resources and other self-help organizations throughout province. Lending library. Write: Oxford County Self-Help Network, 554 Princess St., Woodstock, Ontario N4S 4H1 Canada. Call 1-877-464-3571 or 519-421-2980; Fax: 519-421-0826. Website: http://www.ocl.net/projects/selfhelp E-mail: oshn@on.aibn.com

QUEBEC Information and Referral Centre of Greater Montreal * (Montreal) Founded 1956.

Referrals to local self-help groups. Assistance to new and existing groups. Publishes directory of self-help groups. Write: Information and Referral Centre of Greater Montreal, 3155 Hochelaga St., Suite 101, Montreal H1W 1G4, Quebec, Canada. Call 514-527-1375; Fax: 514-527-9712. Website: http://www.info-reference.qc.ca E-mail: crgm@info-reference.qc.ca EUROPEAN UNION 263

European Mutual-Help Network for Alcohol related Problems (EMNA) Founded 2004. EMMA is a voluntary not-for-profit umbrella organization with the aim of promoting self-help methods in the area of alcohol related problems throughout the European Union. Write: EMNA, 17 Rue Archimede, 3rd Floor, B1000, Brussels, Belgium. Call +3227360572. Website: http://www.emna.org E-mail: info@emna.org

BELGIUM Trefpunt Zelfhulp * (Flanders/Belgium) Information and referrals to Flemish and local self-help groups. Helps new and existing groups. Education, crisis intervention, legal advice, advocacy, publications and research. Write: Trefpunt Zelfhulp vzw, Parkstraat 45 bus 3608, 3000 Leuven, Belgium Visiting address: E. Van Evenstraat 2A, 3000 Leuven, Belgium. Call +32 16 - 23 65 07 or + 32 16 - 32 31 58; Fax: +32 16 - 32 30 52.

Website: http://www.zelfhulp.be E-mail: trefpunt.zelfhulp@soc.kuleuven.be

ENGLAND Contact-A-Family * International. Founded 1975. Limited to illnesses/disabilities.

Provides help and advice to families of children and young people up to the age of 19 with illnesses or disabilities. Maintains online database of support groups covering rare disorders. Links parents of children with the same disability or condition through their family linking service. Write: Contact a Family, 209-211 City Rd., London, EC1V 1JN, UK. Call +44 0 20 7608 8700 (main office) or +44 0808 808 3555 (helpline for families); Fax: +44 (0) 7608 8701. Website: http://www.cafamily.org.uk E-mail: helpline@cafamily.org.uk Self Help Connect UK * National. Founded 1982. Offers support, training, advice and practical services to self-help support groups in Nottinghamshire, England. Information is available on groups throughout Nottinghamshire and the UK as well as local and national support organizations. Publications include an annual Directory of Self-Help Support Groups. A website listing of groups is provided as well. Write: Self-Help Connect UK, Ormiston House, 32-36 Pelham St., Nottingham NG1 2EG, United Kingdom. Call outside UK: +44 115 911 1661; inside UK: 0115 911 1661, 9am-1pm GMT. Website: http://www.selfhelp.org.uk E-mail: admin@selfhelp.org.uk

GERMANY NAKOS * (Nationale Kontakt und Informationsstelle zur Anregung und Unterstuetzung von Selbsthilfegruppen)* Founded 1984. National. 370+ federal support organizations, 290+ local Self-Help Clearinghouses. Clearinghouse distributes information on support groups. Assists new groups in starting. Specialized publications and directory. Literature on starting and maintaining groups. Write: Wilmersdorfer Str. 39, D-10627 Berlin, Germany. Call +030 31 01 89 60; Fax: +030 31 01 89 70. Website: http://www.nakos.de E-mail: selbsthilfe@nakos.de

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Fenix Selfhelpcenter * Founded 1998. Provides information on self-help groups in Stockholm. Offers workshops and offers assistance in starting new groups. Provides a meeting venue open weekdays from 10am-4pm. Write: Fenix Selfhelpcenter, Hagerstensvagen 162, 126 53 Hagersten (Stockholm) Sweden. Call 0046-8-681-0624. Website: http://www.fenix.org.se E-mail: info@fenix.org.se JAPAN

Hyogo Self-Help Support Center * Provides information on self-help groups in the Hyogo area. Write:1-8-22-101 Minamimachi Fukae, Higashinada-ku, Kobe City, Hyogo, Japan. Call +81-78-452-3082. Website: http://hyogo-self-help.main.jp Email: hyogosh@titan.ocn.ne.jp Osaka Self-Help Support Center * Provides information on local self-help groups.

Director: Hiroyuki Matsuda. Call +81-6-6352-0430 (1st and 3rd Saturday of every month between 14:00-18:00); Fax: +81-72-254-9781. Write: Osaka Self-Help Support Center, c/o Osaka Volunteer Association, 1-5-27, Doshin, Kita-ku, Osaka, 530-0035 Japan. Email: matsuda@sw.osakafu-u.ac.jp MEXICO

Fraternidad de Grupos de Autoayuda y Ayuda Mutua * Founded 2004. Offers phone, e-mail and in-person help to those wishing to start a Spanish language selfhelp group, as well as for existing self-help groups. Website includes a 2800+ Spanish language self-help group and association database and extensive information on starting a group; resources for existing groups; illustrative metaphors; specialized articles; resources for professionals and more. The “Group Fraternity� offers training courses for professionals and can design and lead institutional self-help group promotion projects. One of its directives is to help professionals and government agencies better understand self-help groups. Another is to aid research, so academics and students interested in the field are welcome. Write: Fraternidad de Grupos de Autoayuda y Ayda Mutua, Apartado Postal 210, Coyoacan, DF, 04331, Mexico. Call (+52) (55) 5689 6659. Website: http://www.ayudamutua.org E-mail: info@ayudamutua.org NORWAY

National Resource Center for Self-Help, Norway * National. Program providing information on developing support for and studies of self-help groups. Write: Kirkeveien 61, 0364 Oslo, Norway. Call +47 23 33 19 00 or +47 22 96 15 40; Fax: +47 23 33 19 02 or +47 90 88 10 67. Website: http://www.selvhjelp.no or http://www.norskselvhjelpsforum.no or http://www.linkoslo.no E-mail: post@selvhjelp.no or post@norskselvhjelpsforum.no or post@linkoslo.no SWITZERLAND

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Stiftung KOSCH * Founded 2000. Nationwide coordinating organization for self-help groups. Umbrella organization for regional self-help clearinghouses throughout Switzerland. Assistance starting support groups. Write: Stiftung KOSCH, Laufenstrasse 12, CH-4053, Basel, Switzerland. Call +41 061 - 333 86 01 (Verena Vogelsanger); Fax: +41 061 - 333 86 02. Website: http://www.kosch.ch E-mail: gs@kosch.ch UNITED STATES

CALIFORNIA SHARE! (Self-Help And Recovery Exchange) * (Greater Los Angeles area) Provides information and referrals to self-help groups in Los Angeles county. Technical assistance for new and ongoing self-help group meetings. Provides meeting space for groups. Verification of self-help meeting attendance for court or other purposes.

Collaborative housing program. Director: Ruth Hollman. Write: SHARE!, 6666 Green Valley Circle, Culver City, CA 90230-7068. Call 1-877-742-7349 or 310-846-5270 (Mon.-Fri., 10am-9:30pm PST; Sat., 9:30am - 5pm PST; Sun., 1:30-9:30pm PST; 24 hour voice mail (with information on the most requested groups). Website: http://www.shareselfhelp.org E-mail: ruth@shareselfhelp.org

ILLINOIS Self-Help Center * (Champaign and surrounding Counties) Founded 1988.

Information and referral to local support groups. Provides assistance in starting support groups, training workshops, directory, specialized group listings, newsletter, conferences, consultation to existing groups, and library of self-help literature. Also offers self-help group development course through University of Illinois. Write: Loralea Liss, Self-Help Center, Family Service, 405 S. State St., Champaign, IL 61820-5196.

Call 217-352-0099; Fax: 217-352-9512. Website: http://www.selfhelp.famservcc.org E-mail: lliss@familyservicecc.org

KANSAS Wichita State Univ. Center for Community Support & Research * (Statewide) Provides information and referral to self-help groups. Offers technical assistance and consultation to existing groups or persons interested in starting groups. Community education, training workshops, conferences on self-help and self-help group leader handbook. Conducts research. Write: Wichita State University Center for Community Support and Research, P.O. Box 201, 1845 Fairmount, Wichita, KS 67260. Call 1-800445-0116 (in KS) or 316-978-3843. Website: http://www.wichita.edu/ccsr or view their online database at http://www.kansashealthsolutions.org/shn1.0 E-mail: ccsr@wichita.edu

MISSOURI Mental Health America of Eastern Missouri * Assists callers and website visitors in 266

finding support groups in the greater St. Louis area. In addition to the online directory, website contains helpful documents for facilitators and persons wanting to start a group. Write: Mental Health America of Eastern Missouri, 1905 South Grand Blvd, St. Louis, MO 63104. Call 314-773-5930; 1-800-359-5695 (in Missouri); Fax: 314-7735930. Website: http://mhra-em.org

NEW YORK Westchester Self-Help Clearinghouse * (Westchester County). Founded 1979. A central resource for mutual support groups. Provides information and referrals to mutual support groups. Assists in the formation of new groups. Provides community education and online an Directory of self-help groups every other year. Director: Lenore Rosenbaum, MS. Write: Westchester Self-Help Clearinghouse, 845 N. Broadway, White Plains, NY 10603. Call 914-761-0600 ext. 308; Fax: 914-761-5859.

E-mail: lrosenbaum@wjcs.com Niagara Self-Help Clearinghouse * (Niagara County). Founded 1985. Information and referrals to local support groups. Provides technical assistance to new groups.

Networks with other community resources. Helps with new group development and holds group leader training. Directory of self-help groups and mental health video/book library. Write: Niagara Self-Help Clearinghouse, c/o MHA in Niagara County, 36 Pine St., Lockport, NY 14094. Call 716-433-3780 (Mon.-Fri., 8:30am-4pm); Fax: 716-4333847. Website: http://www.mhanc.com The Self-Help Clearinghouse * (Rockland County). Founded 1951. Information and referrals concerning self-help groups. Provides consultation and assistance to new groups that are forming. Publishes newsletter and self-help group directory ($3). Offers assistance starting support groups. Write: Dr. Karen Oates, Self-Help Clearinghouse, MHA of Rockland County, Inc., 706 Executive Blvd., Suite F, Valley Cottage, NY 10989. Call 845-267-2172 ext. 422. Website: http://www.mharockland.org

NORTH CAROLINA SupportWorks * Helps callers in or near Charlotte, North Carolina to find and form mutual help support groups that meet in person or by phone. Provides assistance in finding other related sources. Call 704-331-9500. Website: http://www.supportworks.org E-mail: director@supportworks.org

PENNSYLVANIA Self-Help Information Network Exchange (SHINE) * (Lackawanna County). Provides information and referrals to support groups in northeastern Pennsylvania. Community resource library. Write: SHINE, 829 Jefferson Ave, Scranton, PA 18510. Call 570-9611234 (24 hr.); Admin: 570-347-5616. Website: http://www.vacnepa.org E-mail: vac@vacnepa.org

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END NOTE

DISCLAIMER

The New Jersey Self-Help Group Clearinghouse produces this directory of support groups annually. Information, phone and email contacts, locations, facilitators, meetings days and times are always changing. New groups are added and disbanded groups removed.

Therefore, we advise you not to depend solely upon entries in this directory past one full year of its publication. At, or before that time, please call us to inquire about the availability of the next directory edition. At any time you may also call our helpline, through which we distribute the most up-to-date information on support groups and helplines.

SELF-HELP GROUP CLEARINGHOUSE HELPLINE:

NJ RESIDENTS CALL 1-800-367-6274 | OUTSIDE NJ CALL 973-989-1122 The New Jersey Self-Help Group Clearinghouse is a program of Saint Clare’s Health System and is made possible by funding from the NJ Division of Mental Health and Addictions Services.

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