acadiana * alberta * amarillo * arizona pulmonary associates phoenix * asheville * athens * baltimore - university of maryland * baltimore - hopkins * bend * beth israel nyc * birmingham - al * boston * boston pediatric * boston - ma * brevard county * brooklyn * buffalo - niagara falls * caparra wellness center - puerto rico * capital region of albany * central ca - san jose * central florida * central jersey morristown * central penn * central texas * central utah * charleston - sc * charleston - wv * charlotte * chicago * columbia presbyterian nyc * columbus - oh * connecticut * craven county carteret * dallas * dallas - en espanol group * dartmouth * dayton oh * daytona beach * dc capital breathers * delaware valley * denver * denver - under 35 * des moines - seattle * detroit - michigan * east central florida * el paso - tx * eugene - or * everett - wa * fayetteville * flagstaff * flint-saginaw michigan * fort wayne * fox river valley * fresno * ft. myers - naples * ft. worth * gr isl (ne) * gr rapids (mi) * greater atlanta georgia * greater lehigh valley poconos * green bay - wi * greensboro * greenville - nc * gulf coast mississippi * hampton roads * harbor-ucla * harrisburg hershey * hawaii * hopkins * houston * huron * indianapolis * inl northwest idaho * inner-city clevel * iowa * iowa * jackson - ms * jacksonville area * jefferson city - mo * kansas * kansas city * la pediatric * lancaster - pa * las vegas * latino support of south fl * lexington - south carolina * lima - oh * long island support * los angeles - usc univ. hosp. * louisville * louisville sail * lubbock * madison - wi * magic valley - id * manitoba * marion - oh * mercer - clevel - pittsburgh * michigan * mid-hudson valley ny * midl - odessa area * midls south carolina * milwaukee * Support Group Leader Manual minneapolis metro area * mobile - al * modesto * montana * nashville * nebraska * new castle - de * new hampshire * new hyde park * new orleans support * newport beach * nj-newark beth israel * north central florida * north jersey * north texas * north west arizona - las vegas - clark county * northeast mississippi * northern virginia * northwest georgia tennessee * northwest indiana * northwest peninsula * novato * nyc - uptown * nyc columbia * nyc columbia university medical * oklahoma city - southwest ok * orlo area * pals * pee dee - south carolina * pennsylvania del val * pensacola * philadelphia * phoenix * piedmont * pittsburgh * port charlotte * portl or * puerto rico * puyallup * raleigh - durham - chapel hill * rapid city * reno * rhode isl * richmond * rio gre valley - mcallen * rochester - minnesota * rochester - ny * sacramento * san antonio * san bernardino * san diego * santa barbara * santa fe albuquerqu new mexico * silver spring * south carolina - north * south dakota * south florida * southern colorado * southern illinois - carbondale * southern maine northern maine - central maine - southern maine * southern new jersey * southside virginia * southwest florida * southwest georgia * southwest virginia * springfield * st. louis area * stamford * staten isl * tennessee * the inl northwest * toledo * treasure valley * tri-state cincinnati * tucson * ucsf * utah-pals * vermont * victoria * west los angeles * west michigan * west virginia * wojo of south orange county * wyoming * york * dc capital breathers * hampton roads * harbor-ucla * harrisburg
Introduction to PHA Support Groups
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●●● Introduction to PHA Support Groups ●●● Thank you for taking on the rewarding role of a PHA support group leader. We want to help you in your work in bringing patients together. You have the resources and the strength of the Pulmonary Hypertension Association (PHA) by your side! PHA wants to get to know you, your members, and the work you do. We also want you to get to know us and the wealth of resources we offer you as a leader and to the patients, caregivers and medical professionals in your group. Read on for a snapshot of what PHA does and how we work with support groups. When you are ready to take the next step and start planning your first meeting, contact PHA for information, support and ideas: SupportGroups@PHAssociation.org. -3-|Page
What Does PHA Do? The Pulmonary Hypertension Association (PHA) is a non-profit health organization serving patients with pulmonary hypertension, their family members and the medical professionals who treat them. PHA provides ongoing educational opportunities for patients and the medical community. PHA also offers the chance for patients to connect with others through support groups and online communities, print and online newsletters and numerous other resources. PHA funds cutting-edge research in collaboration with the National Heart, Lung, and Blood Institute and the American Thoracic Society.
The mission of the Pulmonary Hypertension Association (PHA) is to find ways to prevent and cure pulmonary hypertension, and to provide hope for the pulmonary hypertension community through support, education, research, advocacy and awareness. The vision of PHA is to improve the lives of those affected by pulmonary hypertension.
Our Commitment to the Community PHA offers many vital services for its patients and family members as well as added services for physicians and other healthcare providers. Pathlight. Membership in PHA includes a subscription to Pathlight, the official newsletter of the PH community. Produced quarterly by PHA staff and volunteers from the PH community, Pathlight is filled with useful information on new research, PHA events, networking, support groups, living with PH, ways to get involved in fighting this disease, a section for youth with PH, and lots more. PHA Website. Our website is an asset in so many ways. From our “Find a Doctor” listing to medical fact sheets, coping tools for patients and caregivers, online communities and Advocacy and Awareness sections, www.PHAssociation.org meets a variety of needs. Patient-to-Patient Support Line. 1-800-748-7274 The Support Line is one of PHA’s oldest and most valued services. Volunteers take turns answering incoming calls. Callers–whether they are newly diagnosed or living with the disease for many years–reach a friendly and knowledgeable long-term survivor.
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PHA’s Commitment (cont.) Online and Telephone Support Groups. PHA boasts over 245 in-person support groups, but there are still those who are unable to drive to their nearby group. PHA’s provides telephone support for patients, caregivers and parents of PH patients, as well as online chats and email groups for the general PH community and for some of its special populations. Find your local in-person group or online/phone support: www.PHAssociation.org/Connect. Pulmonary Hypertension: A Patient’s Survival Guide (pictured left), serves as a soup-to-nuts resource book covering many of the questions patients and their loved ones might have about living with pulmonary hypertension. The book (350+ pages) includes topics like the mechanics of PH, the latest treatments, patient care and lifestyle issues. The Guide is also available as an e-book. Learn more and order online: www.PHAssociation.org/SurvivalGuide or call 301-565-3004. Caregiver Resources Find support and information for family and friends of PH patients. www.PHAssociation.org/Caregivers/Support Advocacy Tools PHA’s advocacy efforts started small, but now our members make a BIG impact. Our 435 Campaign and online advocacy tools provide you with everything you need to contact your elected leaders and make your voice heard. Our members regularly communicate with their U.S. senators and representatives, as well as local government officials. Get involved: Contact our Advocacy & Awareness Team at 301-565-3004 x749.
Conchita and Kim, DC Capital Breathers Support Group Leaders
Awareness-Raising Opportunities Take action to raise awareness and help save lives! Our “Get Involved” section of our website provides information, guidelines, and step-by-step advice for people who are interested in PHA’s proactive initiatives, such as PHAware. No matter what your experience level, there is something for you. To learn more, visit our website or the Advancing the Cause section of Pathlight. Research PHA is a leader in raising funds for pulmonary hypertension research. PHA’s peer-reviewed Research Fellowship and our partnership programs with the American Thoracic Society (ATS) and the National Heart, Lung, and Blood Institute (NHLBI) are funding important new research. As of 2013, PHA has committed more than $12.5 million to PH research. We have supported over 49 promising researchers through four independently reviewed, cutting-edge research programs. -5-|Page
What is a Support Group? In general, a support group is a two or more people who come together to provide each other with various types of help for a particular shared struggle. The help could be providing relevant information, relating personal experiences, listening to others' experiences, providing sympathetic understanding or establishing social networks. A support group may also provide people the opportunity to fight back, such as engaging in advocacy or fundraising.
What is a PHA Support Group? “My support group is a community of incredibly wonderful people. My goal is to help educate patients through the group, and encourage patients to not only survive, but to live. I want to convince others that ‘It’s a great day to be alive!’” - Carol Bowling, Patient Telephone Support Group Leader
PHA started as a single support group in 1990 and now has over 240 support groups in 49 states, the District of Columbia and Puerto Rico. PHA also has support groups that meet online. Support groups offer a very important service to local PH patients – offering answers to common and daily questions about living with PH, friends to chat with about a disease that most people don’t understand, and the very important sympathetic ear from folks who know first-hand what life is like with PH. PH support groups across the country are a major lifeline for many PH patients. These groups are active in bringing patients together to: Build a supportive community Discuss concerns Share stories and advice Increase advocacy and awareness Put on or participate in special events Learn from great speakers such as doctors and researchers
In 2004, PHA’s support group leaders voted for this design and slogan:
“Care, Share, Be Aware” as the official logo for all of our groups nationwide. The slogan came out of the Southern Colorado PH Support Group. Leaders use this logo on business cards, flyers and printed materials.
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Support Group Leader Resources PHA provides a wealth of resources to help leaders manage their support groups. These resources include: 1. Your own PH Support Group Web page and group email: PHA’s website is the source of online information for patients and caregivers, many of whom are looking for a local group. We will create a website and special email account for your group and train you on how to update it so that patients can find you! We can also make updates to your webpage for you. Visit any group listed to see an example of what your group’s site could look like: www.PHAssociation.org/FindASupportGroup. 2. Free Advertising to PHA Members and Patients: We mail postcards announcing your meetings to our patients – free of charge. Just give us 3-4 weeks’ notice by emailing us your meeting details or filling our our online form: www.PHAssociation.org/CalendarForm. Contact us if you have any trouble accessing this form. 3. Interaction and Mentoring with Other Leaders Online: Who better knows how to run a PH support group than another leader? PHA hosts special Yahoo email group and Facebook group for PH support group leaders to share ideas, ask for advice and bring up issues they're facing as leaders. In addition, you’ll also get updates from the national PHA headquarters on news you and your group can use. If you’re not subscribed, email SupportGroups@PHAssociation.org. 4. "Second Tuesday" Monthly Conference Calls: "Second Tuesday" is a monthly series of webinar and conference call trainings that PHA offers as part of our Support Group Leadership Institute, endowed by United Therapeutics. Each month we tackle topics such as meeting topics, co-leaders, caregiver resources, meeting locations, and meeting sponsorships — to name a few. These trainings feature expert speakers or roundtables where leaders share their concerns and offer advice. Training archives are available to listen and learn from online: www.PHAssociation.org/SecondTuesday. You can join us any second Tuesday of the month, from 3–4 p.m. Eastern Time. Contact PHA to receive email reminders. 5. Support Group Central Fund: PHA created a fund to assist support group leaders in providing food for upcoming meetings. Support groups can apply directly to PHA for this funding, enabling you to host meetings that meet the needs of your group. Support group leaders may also continue to submit requests for sponsorship directly to those companies that are not Central Fund participants. You can learn more about the Support Group Central Fund and apply online: www.PHAssociation.org/GroupCentralFund or call: 301-565-3004 x758. 6. Support Group Leader Resource Center: PHA has created a special place on our website for leaders to access ideas, graphics, tutorials and more resources for help in leading your group. Check it out: www.PHAssociation.org/SGLResourceCenter. -7-|Page
Pulmonary Hypertension Association 801 Roeder Road, Suite 1000 Silver Spring, MD 20910 Phone: 301-565-3004 • Fax: 301-565-3994 Patient-to-Patient Support Line: 800-748-7274 www.PHAssociation.org Made possible by an Awareness Month Sponsorship by
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