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European Patient Group Directory 2011–2012

Media Partner: European Health Forum Gastein Tauernplatz 1 5630 Bad Hofgastein Austria Tel: +43-6432-3393-270 email: info@ehfg.org http://www.ehfg.org

Publisher: Burson-Marsteller 37 Square de Meeûs B-1000 Brussels Belgium Tel: +32-(0)2-743-66-11 email: david.earnshaw@bm.com http://www.bmbrussels.eu

Contents

Foreword from Paola Testori Coggi

Index

A-Z list of specialisations

A-Z list of entries

A-Z list of acronyms

Preface from the publisher

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Preface from the author

Key to data

1-176

ÂŠ Burson-Marsteller/PatientView

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European Patient Group Directory 2011â&#x20AC;&#x201C;2012

Entries (in alphabetical order)

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Foreword

This fourth edition of the European Patient Group Directory focuses on the transparency of the governance and funding of groups active in health policy. This is in line with the approach taken by the European Transparency Initiative (ETI) – a joint European Commission and Parliament measure. Openness can only increase the legitimacy of stakeholders, the process of consultation, and EU policy itself.

I am certain that this latest edition of the Directory will be used by many actors in health and will provide useful guidance and open access to patient groups in the European Union and beyond.

Paola Testori Coggi Director General for Health and Consumers European Commission

Since 2004, the EU Open Health Forum has convened every 2 years to inform and involve key health stakeholders in European health policy. The EU Health Policy Forum, which brings together 52 umbrella organizations, meets more frequently to review the EU’s work in various areas of public health and to adopt recommendations. In addition, through on-line consultations on our policy initiatives, we ensure that the widest range of stakeholders and citizens have their voices heard. These and other mechanisms ensure that patient groups are completely engaged in shaping patient-centred healthcare policy in the EU.

European Patient Group Directory 2011–2012

In the European Commission’s Health & Consumers Directorate, we have a long tradition of involving patient groups in our discussion fora and consider them a fundamental stakeholder of our portfolio. In the area of health it is essential that we work together at European level with the widest possible range of partners to develop and implement health policy and actions. This doesn’t just mean national governments and international organizations, but also NGOs, professional bodies and patients groups, as often it is those closest to the challenges that can give us the greatest insights into how to go about tackling them.

Indexes A-Z lists of specialisations, entries and acronyms

Assigning specialisations to the organisations in this Directory is subjective. Groups that straddle several activities have been listed under more than one specialty. Some groups may not agree with their categorisation. This contents list of specialties can only be an approximate guide.

Specialisations ADDICTION Eurocare (European Alcohol Policy Alliance), Page 30. Europe Against Drugs (EURAD), Page 38. European Mutual-Help Network for Alcohol-Related Problems (EMNA), Page 101. ALTERNATIVE AND COMPLEMENTARY MEDICINES European Federation of Homeopathic Patients’ Associations (EFHPA), Page 73. European Federation of Patients’ Associations for Anthroposophic Medicine (EFPAM), Page 78.

European Patient Group Directory 2011–2012

AUTO-IMMUNE AND IMMUNE DISEASES Coeliac Youth of Europe (CYE), Page 21. European Association of Patients Organizations of Sarcoidosis and other Granulomatous Disorders (EPOS), Page 46. Federation of European Scleroderma Associations (FESCA), Page 127. Lupus Europe, Page 154. BLOOD DISORDERS AntiCoagulation Europe (ACE), Page 9. European Federation of Associations of Patients with Haemochromatosis (EFAPH), Page 70. European Haemophilia Consortium (EHC), Page 85. Thalassaemia International Federation (TIF), Page 175. BONE International Osteoporosis Foundation (IOF), Page 148. BRAIN INJURY Brain Injured and Families - European Confederation (BIF-EC), Page 17. CANCER Association of European Cancer Leagues (ECL), Page 12. Cancer Support Group asbl (CSG), Page 18. CML Advocates Network, Page 20. Das Lebenshaus e.V., Page 25. EUROPA DONNA—the European Breast Cancer Coalition (ED), Page 35. Europa Uomo—the European Prostate Coalition (EUomo), Page 36. europacolon (EC), Page 37. European CanCer Organisation (ECCO), Page 51. European Cancer Patient Coalition (ECPC), Page 52. European Cervical Cancer Association (ECCA), Page 53. European Myeloma Platform (EMP), Page 102. Global GIST Network (GGN), Page 131. Global Lung Cancer Coalition (GLCC), Page 132.

Indexes / specialisations

International Brain Tumour Alliance (IBTA), Page 143. LeukaNET e.V. [Formerly Leukämie-Online e.V.], Page 153. Lymphoma Coalition (LC), Page 155. Myeloma Euronet (ME), Page 158. Rare Cancers Europe (RCE) [Formerly European Action Against Rare Cancers; EAARC], Page 166. Sarcoma Patients EuroNet Association (SPAEN), Page 170. CARERS Eurocarers (European Association Working for Carers), Page 31. European Federation of Unpaid Parents and Carers at Home (FEFAF), Page 81. CHILDREN Eurochild , Page 32. European Association for Children in Hospital (EACH), Page 43. European Federation of Parents of Hearing-Impaired Children (FEPEDA), Page 77. European Foundation for the Care of Newborn Infants (EFCNI), Page 82. CIVIC AND CONSUMER WITH INTEREST IN HEALTHCARE Active Citizenship Network (ACN), Page 1. BEUC—the European Consumers’ Organisation , Page 16. European Community of Consumer Co-operatives (Euro Coop), Page 57. European Federation of National Organisations working with the Homeless (FEANTSA), Page 74. Health Action International-Europe (HAI-Europe), Page 133. Platform of European Social NGOs (Social Platform), Page 164. CONGENITAL International Federation for Spina Bifida and Hydrocephalus (IF), Page 147.

FAMILIES AND HEALTH Confederation of Family Organisations in the European Union (COFACE), Page 22. European Family Therapy Association (EFTA), Page 67. European Federation of Associations of Families of People with Mental Illness (EUFAMI), Page 69. European Foundation for the Care of Newborn Infants (EFCNI), Page 82.

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DISABILITY AMD Alliance International (AMDAI), Page 8. Association for Research and Training on Integration in Europe (ARFIE), Page 11. Disabled Peoples’ International-Europe (DPI-Europe), Page 27. European Association of Cochlear Implant Users (EURO-CIU), Page 45. European Association of Service Providers for Persons with Disabilities (EASPD), Page 47. European Blind Union (EBU), Page 48. European Coalition for Community Living (ECCL), Page 55. European Co-operation in Anthroposophical Curative Education and Social Therapy (ECCE), Page 59. European Deafblind Network (EDbN), Page 60. European Disability Forum (EDF), Page 62. European Federation of Hard of Hearing People (EFHOH), Page 72. European Federation of Road Traffic Victims (FEVR), Page 80. European League of Stuttering Associations (ELSA), Page 94. European Network on Independent Living (ENIL), Page 107. European Spinal Cord Injury Federation (ESCIF), Page 119. European Union of the Deaf (EUD), Page 120. EuroTinnitus Association (EuroTA), Page 125. Hear-it AISBL (Hear-it), Page 137. Retina International , Page 167. Social Firms Europe CEFEC (CEFEC), Page 173.

European Patient Group Directory 2011–2012

DIABETES International Diabetes Federation-European Region (IDF-Europe), Page 146.

Indexes / specialisations

GASTROINTESTINAL Association of European Coeliac Societies (AOECS), Page 13. European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA), Page 71. European Ostomy Association (EOA), Page 109. GENDER HEALTH European Institute of Women’s Health (EIWH), Page 90. European Men’s Health Forum (EMHF), Page 99.

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European Patient Group Directory 2011–2012

GENERAL HEALTHCARE European Patients Empowerment for Customised Solutions (EPECS), Page 111. European Patients’ Forum (EPF), Page 112. Health Care Without Harm Europe (HCWH Europe), Page 135. Iatrogenic Europe Unite (IEU-Alliance), Page 140. International Alliance of Patients’ Organizations (IAPO), Page 142. GENETIC AND RARE DISEASES Alfa Europe Federation e.V. (AEF), Page 5. Alliance Sanfilippo (ASF), Page 6. Cystic Fibrosis Europe (CF Europe; CFE), Page 24. DEBRA International, Page 26. euro-Ataxia (European Federation of Hereditary Ataxias), Page 29. European Association against Leukodystrophies (ELA), Page 42. European Chromosome 11q Network (11q Network), Page 54. European Down Syndrome Association (EDSA), Page 63. European Federation of Associations of Patients with Haemochromatosis (EFAPH), Page 70. European Galactosaemia Society (EGS), Page 83. European Gaucher Alliance (EGA), Page 84. European Marfan Support Network (EMSN), Page 97. European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (E.S.PKU), Page 118. European Waldenström Macroglobulinemia Network (EWMnetwork), Page 121. EURORDIS (European Organisation for Rare Diseases), Page 124. Fabry International Network (FIN), Page 126. Federation of European Williams Syndrome Associations (FEWS), Page 128. Hypophosphatasie Europe, Page 139. International Pompe Association (IPA), Page 151. ORPHANET , Page 160. Osteogenesis Imperfecta Federation Europe (OIFE), Page 161. Patients Network for Medical Research and Health (EGAN) [Formerly European Genetic Alliances’ Network], Page 162. Rett Syndrome Europe (RSE), Page 168. HEART AND CIRCULATORY DISEASES Arrhythmia Alliance (A-A), Page 10. European Congenital Heart Disease Organisation (ECHDO), Page 58. European Heart and Lung Transplant Federation (EHLTF), Page 87. European Heart Network (EHN), Page 88. International Cholestrol Foundation (Interchol; ICF), Page 145. Stroke Alliance for Europe (SAFE), Page 174. HIV/AIDS AIDS Action Europe (AAE), Page 4. Eurasian Harm Reduction Network (EHRN), Page 28. European AIDS Treatment Group (EATG), Page 39. European Coalition of Positive People (ECPP), Page 56. HIV Europe, Page 138.

Indexes / specialisations

INFECTIOUS Confederation of Meningitis Organisations Inc (CoMO), Page 23. European Polio Union (EPU), Page 114. Polio Initiative Europa e.V. (PIE), Page 165. LEARNING DISABILITY Autism-Europe (A-E), Page 15. European Dyslexia Association (EDA), Page 64. Inclusion Europe , Page 141. LIVER DISEASES European Liver Patients Association (ELPA), Page 95.

OLDER PEOPLE AGE Platform Europe (AGE), Page 3. AMD Alliance International (AMDAI), Page 8. European Federation of Older Persons (EURAG), Page 76. PALLIATIVE Right to Die Europe (RtD-E), Page 169. PRIMARY IMMUNODEFICIENCIES International Patient Organisation for Primary Immunodeficiencies (IPOPI), Page 149. PUBLIC HEALTH Eurasian Harm Reduction Network (EHRN), Page 28. European Alliance for Access to Safe Medicines (EAASM), Page 40.

NEUROLOGICAL CONDITIONS Alzheimer Europe (AE), Page 7. Cerebral Palsy-European Communities Association (CP-ECA), Page 19. European Alliance of Neuro-Muscular Disorders Association (EAMDA), Page 41. European Brain Council (EBC), Page 49. European Brain Injury Society (EBIS), Page 50. European Dystonia Federation (EDF), Page 65. European Federation of Neurological Associations (EFNA), Page 75. European Headache Alliance (EHA), Page 86. European Huntington’s Disease Network (EHDN), Page 89. European ME Alliance (EMEA), Page 98. European Multiple Sclerosis Platform (EMSP), Page 100. European Network of Fibromyalgia Associations (ENFA), Page 106. European Neuro Muscular Centre (ENMC), Page 108. European Parkinson’s Disease Association (EPDA), Page 110. International Bureau for Epilepsy-Europe (IBE-Europe), Page 144. SMA Europe, Page 171.

European Patient Group Directory 2011–2012

MENTAL HEALTH ADHD-Europe, Page 2. Euro-Methwork , Page 33. Europe Against Drugs (EURAD), Page 38. European Depression Association (EDA), Page 61. European Network of (Ex-) Users and Survivors of Psychiatry (ENUSP), Page 105. European Society for Mental Health and Deafness (ESMHD), Page 117. Euro-Psy-Rehabilitation (Europsy), Page 123. GAMIAN-Europe (Global Alliance of Mental Illness Advocacy Networks-Europe; GE), Page 130. Mental Disability Advocacy Center (MDAC), Page 156. Mental Health Europe – Santé Mentale Europe (MHE-SME), Page 157. National Suicide Bereavement Support Network (NSBSN), Page 159.

Indexes / specialisations

European Association for Injury Prevention and Safety Promotion (EuroSafe), Page 44. European Community of Consumer Co-operatives (Euro Coop), Page 57. European Federation of Road Traffic Victims (FEVR), Page 80. European Network for Smoking and Tobacco Prevention (ENSP), Page 104. European Public Health Alliance (EPHA), Page 115. Health and Environment Alliance (HEAL), Page 134. Health First Europe (HFE), Page 136. International Union for Health Promotion and Education/European Region (IUHPE/Euro), Page 152. Pesticide Action Network Europe (PAN Europe), Page 163. Smokefree Partnership (SFP), Page 172. RENAL European Kidney Health Alliance (EKHA), Page 91. European Kidney Patients’ Federation (CEAPIR), Page 92. REPRODUCTIVE AND SEXUAL HEALTH ASTRA Network (Central and East European Women’s Network for Sexual and Reproductive Health and Rights), Page 14. EuroNGOs (European NGOs for Sexual and Reproductive Health and Rights, Population and Development), Page 34. European Endometriosis Alliance (EEA), Page 66. European Sexual Health Alliance (ESHA), Page 116. European Youth Network on Sexual and Reproductive Rights (YouAct), Page 122. Fertility Europe (FE), Page 129. International Planned Parenthood Federation European Network (IPPF EN), Page 150. RESPIRATORY European Federation of Allergy and Airways Diseases Patients Associations (EFA), Page 68. European Lung Foundation (ELF), Page 96. RHEUMATIC AND MUSCULOSKELETAL DISEASES European League Against Rheumatism (EULAR), Page 93. European Network for Children with Arthritis (ENCA), Page 103.

European Patient Group Directory 2011–2012

SCIENTIFIC RESEARCH European Platform for Patients’ Organisations, Science and Industry (EPPOSI), Page 113. Hypophosphatasie Europe, Page 139. SKIN European Federation of Psoriasis Associations (EUROPSO), Page 79. URINARY World Federation of Incontinent Patients (WFIP), Page 176. YOUNG PEOPLE Coeliac Youth of Europe (CYE), Page 21. European Youth Network on Sexual and Reproductive Rights (YouAct), Page 122.

Indexes / list of entries

List of entries

C Cancer Support Group asbl (CSG), Page 18. Cerebral Palsy-European Communities Association (CP-ECA), Page 19. CML Advocates Network , Page 20. Coeliac Youth of Europe (CYE), Page 21. Confederation of Family Organisations in the European Union (COFACE), Page 22. Confederation of Meningitis Organisations Inc (CoMO), Page 23. Cystic Fibrosis Europe (CF Europe; CFE), Page 24. D Das Lebenshaus e.V. , Page 25. DEBRA International , Page 26. Disabled Peoples’ International-Europe (DPI-Europe), Page 27. E Eurasian Harm Reduction Network (EHRN), Page 28. euro-Ataxia (European Federation of Hereditary Ataxias), Page 29. Eurocare (European Alcohol Policy Alliance), Page 30. Eurocarers (European Association Working for Carers), Page 31. Eurochild , Page 32.

B BEUC—the European Consumers’ Organisation , Page 16. Brain Injured and Families - European Confederation (BIF-EC), Page 17.

European Patient Group Directory 2011–2012

A Active Citizenship Network (ACN), Page 1. ADHD-Europe , Page 2. AGE Platform Europe (AGE), Page 3. AIDS Action Europe (AAE), Page 4. Alfa Europe Federation e.V. (AEF), Page 5. Alliance Sanfilippo (ASF), Page 6. Alzheimer Europe (AE), Page 7. AMD Alliance International (AMDAI), Page 8. AntiCoagulation Europe (ACE), Page 9. Arrhythmia Alliance (A-A), Page 10. Association for Research and Training on Integration in Europe (ARFIE), Page 11. Association of European Cancer Leagues (ECL), Page 12. Association of European Coeliac Societies (AOECS), Page 13. ASTRA Network (Central and East European Women’s Network for Sexual and Reproductive Health and Rights), Page 14. Autism-Europe (A-E), Page 15.

European Patient Group Directory 2011–2012

Euro-Methwork , Page 33. EuroNGOs (European NGOs for Sexual and Reproductive Health and Rights, Population and Development), Page 34. EUROPA DONNA—the European Breast Cancer Coalition (ED), Page 35. Europa Uomo—the European Prostate Coalition (EUomo), Page 36. europacolon (EC), Page 37. Europe Against Drugs (EURAD), Page 38. European AIDS Treatment Group (EATG), Page 39. European Alliance for Access to Safe Medicines (EAASM), Page 40. European Alliance of Neuro-Muscular Disorders Association (EAMDA), Page 41. European Association against Leukodystrophies (ELA), Page 42. European Association for Children in Hospital (EACH), Page 43. European Association for Injury Prevention and Safety Promotion (EuroSafe), Page 44. European Association of Cochlear Implant Users (EURO-CIU), Page 45. European Association of Patients Organizations of Sarcoidosis and other Granulomatous Disorders (EPOS), Page 46. European Association of Service Providers for Persons with Disabilities (EASPD), Page 47. European Blind Union (EBU), Page 48. European Brain Council (EBC), Page 49. European Brain Injury Society (EBIS), Page 50. European CanCer Organisation (ECCO), Page 51. European Cancer Patient Coalition (ECPC), Page 52. European Cervical Cancer Association (ECCA), Page 53. European Chromosome 11q Network (11q Network), Page 54. European Coalition for Community Living (ECCL), Page 55. European Coalition of Positive People (ECPP), Page 56. European Community of Consumer Co-operatives (Euro Coop), Page 57. European Congenital Heart Disease Organisation (ECHDO), Page 58. European Co-operation in Anthroposophical Curative Education and Social Therapy (ECCE), Page 59. European Deafblind Network (EDbN), Page 60. European Depression Association (EDA), Page 61. European Disability Forum (EDF), Page 62. European Down Syndrome Association (EDSA), Page 63. European Dyslexia Association (EDA), Page 64. European Dystonia Federation (EDF), Page 65. European Endometriosis Alliance (EEA), Page 66. European Family Therapy Association (EFTA), Page 67. European Federation of Allergy and Airways Diseases Patients Associations (EFA), Page 68. European Federation of Associations of Families of People with Mental Illness (EUFAMI), Page 69. European Federation of Associations of Patients with Haemochromatosis (EFAPH), Page 70. European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA), Page 71. European Federation of Hard of Hearing People (EFHOH), Page 72. European Federation of Homeopathic Patients’ Associations (EFHPA), Page 73. European Federation of National Organisations working with the Homeless (FEANTSA), Page 74. European Federation of Neurological Associations (EFNA), Page 75. European Federation of Older Persons (EURAG), Page 76. European Federation of Parents of Hearing-Impaired Children (FEPEDA), Page 77. European Federation of Patients’ Associations for Anthroposophic Medicine (EFPAM), Page 78. European Federation of Psoriasis Associations (EUROPSO), Page 79. European Federation of Road Traffic Victims (FEVR), Page 80. European Federation of Unpaid Parents and Carers at Home (FEFAF), Page 81. European Foundation for the Care of Newborn Infants (EFCNI), Page 82. European Galactosaemia Society (EGS), Page 83. European Gaucher Alliance (EGA), Page 84. European Haemophilia Consortium (EHC), Page 85. European Headache Alliance (EHA), Page 86. European Heart and Lung Transplant Federation (EHLTF), Page 87.

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Indexes / list of entries

F Fabry International Network (FIN), Page 126. Federation of European Scleroderma Associations (FESCA), Page 127. Federation of European Williams Syndrome Associations (FEWS), Page 128. Fertility Europe (FE), Page 129. G GAMIAN-Europe (Global Alliance of Mental Illness Advocacy Networks-Europe; GE), Page 130. Global GIST Network (GGN), Page 131. Global Lung Cancer Coalition (GLCC), Page 132. H Health Action International-Europe (HAI-Europe), Page 133. Health and Environment Alliance (HEAL), Page 134. Health Care Without Harm Europe (HCWH Europe), Page 135. Health First Europe (HFE), Page 136. Hear-it AISBL (Hear-it), Page 137.

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European Heart Network (EHN), Page 88. European Huntington’s Disease Network (EHDN), Page 89. European Institute of Women’s Health (EIWH), Page 90. European Kidney Health Alliance (EKHA), Page 91. European Kidney Patients’ Federation (CEAPIR), Page 92. European League Against Rheumatism (EULAR), Page 93. European League of Stuttering Associations (ELSA), Page 94. European Liver Patients Association (ELPA), Page 95. European Lung Foundation (ELF), Page 96. European Marfan Support Network (EMSN), Page 97. European ME Alliance (EMEA), Page 98. European Men’s Health Forum (EMHF), Page 99. European Multiple Sclerosis Platform (EMSP), Page 100. European Mutual-Help Network for Alcohol-Related Problems (EMNA), Page 101. European Myeloma Platform (EMP), Page 102. European Network for Children with Arthritis (ENCA), Page 103. European Network for Smoking and Tobacco Prevention (ENSP), Page 104. European Network of (Ex-) Users and Survivors of Psychiatry (ENUSP), Page 105. European Network of Fibromyalgia Associations (ENFA), Page 106. European Network on Independent Living (ENIL), Page 107. European Neuro Muscular Centre (ENMC), Page 108. European Ostomy Association (EOA), Page 109. European Parkinson’s Disease Association (EPDA), Page 110. European Patients Empowerment for Customised Solutions (EPECS), Page 111. European Patients’ Forum (EPF), Page 112. European Platform for Patients’ Organisations, Science and Industry (EPPOSI), Page 113. European Polio Union (EPU), Page 114. European Public Health Alliance (EPHA), Page 115. European Sexual Health Alliance (ESHA), Page 116. European Society for Mental Health and Deafness (ESMHD), Page 117. European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (E.S.PKU), Page 118. European Spinal Cord Injury Federation (ESCIF), Page 119. European Union of the Deaf (EUD), Page 120. European Waldenström Macroglobulinemia Network (EWMnetwork), Page 121. European Youth Network on Sexual and Reproductive Rights (YouAct), Page 122. Euro-Psy-Rehabilitation (Europsy), Page 123. EURORDIS (European Organisation for Rare Diseases), Page 124. EuroTinnitus Association (EuroTA), Page 125.

European Patient Group Directory 2011–2012

Indexes / list of entries

HIV Europe , Page 138. Hypophosphatasie Europe , Page 139. I Iatrogenic Europe Unite (IEU-Alliance), Page 140. Inclusion Europe , Page 141. International Alliance of Patients’ Organizations (IAPO), Page 142. International Brain Tumour Alliance (IBTA), Page 143. International Bureau for Epilepsy-Europe (IBE-Europe), Page 144. International Cholestrol Foundation (Interchol; ICF), Page 145. International Diabetes Federation-European Region (IDF-Europe), Page 146. International Federation for Spina Bifida and Hydrocephalus (IF), Page 147. International Osteoporosis Foundation (IOF), Page 148. International Patient Organisation for Primary Immunodeficiencies (IPOPI), Page 149. International Planned Parenthood Federation European Network (IPPF EN), Page 150. International Pompe Association (IPA), Page 151. International Union for Health Promotion and Education/European Region (IUHPE/Euro), Page 152. L LeukaNET e.V. [Formerly Leukämie-Online e.V.], Page 153. Lupus Europe , Page 154. Lymphoma Coalition (LC), Page 155. M Mental Disability Advocacy Center (MDAC), Page 156. Mental Health Europe – Santé Mentale Europe (MHE-SME), Page 157. Myeloma Euronet (ME), Page 158. N National Suicide Bereavement Support Network (NSBSN), Page 159.

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European Patient Group Directory 2011–2012

O ORPHANET , Page 160. Osteogenesis Imperfecta Federation Europe (OIFE), Page 161. P Patients Network for Medical Research and Health (EGAN) [Formerly European Genetic Alliances’ Network], Page 162. Pesticide Action Network Europe PAN Europe, Page 163. Platform of European Social NGOs (Social Platform), Page 164. Polio Initiative Europa e.V. (PIE), Page 165. R Rare Cancers Europe (RCE) [Formerly European Action Against Rare Cancers; EAARC], Page 166. Retina International , Page 167. Rett Syndrome Europe (RSE), Page 168. Right to Die Europe (RtD-E), Page 169. S Sarcoma Patients EuroNet Association (SPAEN), Page 170. SMA Europe , Page 171. Smokefree Partnership (SFP), Page 172. Social Firms Europe CEFEC (CEFEC), Page 173. Stroke Alliance for Europe (SAFE), Page 174. T Thalassaemia International Federation (TIF), Page 175. W World Federation of Incontinent Patients (WFIP), Page 176.

Indexes / list of acronyms

List of acronyms

(11q Network), European Chromosome 11q Network, Page 54. A (A-A), Arrhythmia Alliance, Page 10. (AAE), AIDS Action Europe, Page 4. (ACE), AntiCoagulation Europe, Page 9. (ACN), Active Citizenship Network, Page 1. (AE), Alzheimer Europe, Page 7. (A-E), Autism-Europe, Page 15. (AEF), Alfa Europe Federation e.V., Page 5. (AGE), AGE Platform Europe, Page 3. (AMDAI), AMD Alliance International, Page 8. (AOECS), Association of European Coeliac Societies, Page 13. (ARFIE), Association for Research and Training on Integration in Europe, Page 11. (ASF), Alliance Sanfilippo, Page 6.

Page 14.

(CF Europe; CFE), Cystic Fibrosis Europe, Page 24. (COFACE), Confederation of Family Organisations in the European Union, Page 22. (CoMO), Confederation of Meningitis Organisations Inc, Page 23. (CP-ECA), Cerebral Palsy-European Communities Association, Page 19. (CSG), Cancer Support Group asbl, Page 18. (CYE), Coeliac Youth of Europe, Page 21. D (DPI-Europe), Disabled Peoples’ International-Europe, Page 27. E (E.S.PKU), European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria, Page 118. (EAASM), European Alliance for Access to Safe Medicines, Page 40. (EACH), European Association for Children in Hospital, Page 43. (EAMDA), European Alliance of Neuro-Muscular Disorders Association, Page 41. (EASPD), European Association of Service Providers for Persons with Disabilities, Page 47. (EATG), European AIDS Treatment Group, Page 39.

C (CEAPIR), European Kidney Patients’ Federation, Page 92. (CEFEC), Social Firms Europe CEFEC, Page 173. (Central and East European Women’s Network for Sexual and Reproductive Health and Rights), ASTRA Network,

European Patient Group Directory 2011–2012

B (BIF-EC), Brain Injured and Families - European Confederation, Page 17.

European Patient Group Directory 2011–2012

(EBC), European Brain Council, Page 49. (EBIS), European Brain Injury Society, Page 50. (EBU), European Blind Union, Page 48. (EC), europacolon, Page 37. (ECCA), European Cervical Cancer Association, Page 53. (ECCE), European Co-operation in Anthroposophical Curative Education and Social Therapy, Page 59. (ECCL), European Coalition for Community Living, Page 55. (ECCO), European CanCer Organisation, Page 51. (ECHDO), European Congenital Heart Disease Organisation, Page 58. (ECL), Association of European Cancer Leagues, Page 12. (ECPC), European Cancer Patient Coalition, Page 52. (ECPP), European Coalition of Positive People, Page 56. (ED), EUROPA DONNA—the European Breast Cancer Coalition, Page 35. (EDA), European Depression Association, Page 61. (EDA), European Dyslexia Association, Page 64. (EDbN), European Deafblind Network, Page 60. (EDF), European Disability Forum, Page 62. (EDF), European Dystonia Federation, Page 65. (EDSA), European Down Syndrome Association, Page 63. (EEA), European Endometriosis Alliance, Page 66. (EFA), European Federation of Allergy and Airways Diseases Patients Associations, Page 68. (EFAPH), European Federation of Associations of Patients with Haemochromatosis, Page 70. (EFCCA), European Federation of Crohn’s and Ulcerative Colitis Associations, Page 71. (EFCNI), European Foundation for the Care of Newborn Infants, Page 82. (EFHOH), European Federation of Hard of Hearing People, Page 72. (EFHPA), European Federation of Homeopathic Patients’ Associations, Page 73. (EFNA), European Federation of Neurological Associations, Page 75. (EFPAM), European Federation of Patients’ Associations for Anthroposophic Medicine, Page 78. (EFTA), European Family Therapy Association, Page 67. (EGA), European Gaucher Alliance, Page 84. (EGAN) [Formerly European Genetic Alliances’ Network], Patients Network for Medical Research and Health, Page 162. (EGS), European Galactosaemia Society, Page 83. (EHA), European Headache Alliance, Page 86. (EHC), European Haemophilia Consortium, Page 85. (EHDN), European Huntington’s Disease Network, Page 89. (EHLTF), European Heart and Lung Transplant Federation, Page 87. (EHN), European Heart Network, Page 88. (EHRN), Eurasian Harm Reduction Network, Page 28. (EIWH), European Institute of Women’s Health, Page 90. (EKHA), European Kidney Health Alliance, Page 91. (ELA), European Association against Leukodystrophies, Page 42. (ELF), European Lung Foundation, Page 96. (ELPA), European Liver Patients Association, Page 95. (ELSA), European League of Stuttering Associations, Page 94. (EMEA), European ME Alliance, Page 98. (EMHF), European Men’s Health Forum, Page 99. (EMNA), European Mutual-Help Network for Alcohol-Related Problems, Page 101. (EMP), European Myeloma Platform, Page 102. (EMSN), European Marfan Support Network, Page 97. (EMSP), European Multiple Sclerosis Platform, Page 100. (ENCA), European Network for Children with Arthritis, Page 103. (ENFA), European Network of Fibromyalgia Associations, Page 106. (ENIL), European Network on Independent Living, Page 107. (ENMC), European Neuro Muscular Centre, Page 108. (ENSP), European Network for Smoking and Tobacco Prevention, Page 104.

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Indexes / list of acronyms

G (GGN), Global GIST Network, Page 131. (GLCC), Global Lung Cancer Coalition, Page 132. (Global Alliance of Mental Illness Advocacy Networks-Europe; GE), GAMIAN-Europe, Page 130. H (HAI-Europe), Health Action International-Europe, Page 133. (HCWH Europe), Health Care Without Harm Europe, Page 135. (HEAL), Health and Environment Alliance, Page 134. (Hear-it), Hear-it AISBL, Page 137. (HFE), Health First Europe, Page 136.

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F (FE), Fertility Europe, Page 129. (FEANTSA), European Federation of National Organisations working with the Homeless, Page 74. (FEFAF), European Federation of Unpaid Parents and Carers at Home, Page 81. (FEPEDA), European Federation of Parents of Hearing-Impaired Children, Page 77. (FESCA), Federation of European Scleroderma Associations, Page 127. (FEVR), European Federation of Road Traffic Victims, Page 80. (FEWS), Federation of European Williams Syndrome Associations, Page 128. (FIN), Fabry International Network, Page 126.

European Patient Group Directory 2011–2012

(ENUSP), European Network of (Ex-) Users and Survivors of Psychiatry, Page 105. (EOA), European Ostomy Association, Page 109. (EPDA), European Parkinson’s Disease Association, Page 110. (EPECS), European Patients Empowerment for Customised Solutions, Page 111. (EPF), European Patients’ Forum, Page 112. (EPHA), European Public Health Alliance, Page 115. (EPOS), European Association of Patients Organizations of Sarcoidosis and other Granulomatous Disorders, Page 46. (EPPOSI), European Platform for Patients’ Organisations, Science and Industry, Page 113. (EPU), European Polio Union, Page 114. (ESCIF), European Spinal Cord Injury Federation, Page 119. (ESHA), European Sexual Health Alliance, Page 116. (ESMHD), European Society for Mental Health and Deafness, Page 117. (EUD), European Union of the Deaf, Page 120. (EUFAMI), European Federation of Associations of Families of People with Mental Illness, Page 69. (EULAR), European League Against Rheumatism, Page 93. (EUomo), Europa Uomo—the European Prostate Coalition, Page 36. (EURAD), Europe Against Drugs, Page 38. (EURAG), European Federation of Older Persons, Page 76. (Euro Coop), European Community of Consumer Co-operatives, Page 57. (EURO-CIU), European Association of Cochlear Implant Users, Page 45. (European Alcohol Policy Alliance), Eurocare, Page 30. (European Association Working for Carers), Eurocarers, Page 31. (European Federation of Hereditary Ataxias), euro-Ataxia, Page 29. (European NGOs for Sexual and Reproductive Health and Rights, Population and Development), EuroNGOs, Page 34. (European Organisation for Rare Diseases), EURORDIS, Page 124. (EUROPSO), European Federation of Psoriasis Associations, Page 79. (Europsy), Euro-Psy-Rehabilitation, Page 123. (EuroSafe), European Association for Injury Prevention and Safety Promotion, Page 44. (EuroTA), EuroTinnitus Association, Page 125. (EWMnetwork), European Waldenström Macroglobulinemia Network, Page 121.

Indexes / list of acronyms

I (IAPO), International Alliance of Patients’ Organizations, Page 142. (IBE-Europe), International Bureau for Epilepsy-Europe, Page 144. (IBTA), International Brain Tumour Alliance, Page 143. (IDF-Europe), International Diabetes Federation-European Region, Page 146. (IEU-Alliance), Iatrogenic Europe Unite, Page 140. (IF), International Federation for Spina Bifida and Hydrocephalus, Page 147. (Interchol; ICF), International Cholestrol Foundation, Page 145. (IOF), International Osteoporosis Foundation, Page 148. (IPA), International Pompe Association, Page 151. (IPOPI), International Patient Organisation for Primary Immunodeficiencies, Page 149. (IPPF EN), International Planned Parenthood Federation European Network, Page 150. (IUHPE/Euro), International Union for Health Promotion and Education/European Region, Page 152. L (LC), Lymphoma Coalition, Page 155. M (MDAC), Mental Disability Advocacy Center, Page 156. (ME), Myeloma Euronet, Page 158. (MHE-SME), Mental Health Europe – Santé Mentale Europe, Page 157. N (NSBSN), National Suicide Bereavement Support Network, Page 159. O (OIFE), Osteogenesis Imperfecta Federation Europe, Page 161. P (PAN Europe), Pesticide Action Network Europe, Page 163. (PIE), Polio Initiative Europa e.V., Page 165.

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European Patient Group Directory 2011–2012

R (RCE) [Formerly European Action Against Rare Cancers; EAARC], Rare Cancers Europe, Page 166. (RSE), Rett Syndrome Europe, Page 168. (RtD-E), Right to Die Europe, Page 169. S (SAFE), Stroke Alliance for Europe, Page 174. (SFP), Smokefree Partnership, Page 172. (Social Platform), Platform of European Social NGOs, Page 164. (SPAEN), Sarcoma Patients EuroNet Association, Page 170. T (TIF), Thalassaemia International Federation, Page 175. W (WFIP), World Federation of Incontinent Patients, Page 176. Y (YouAct), European Youth Network on Sexual and Reproductive Rights, Page 122.

Preface from the publisher

Burson-Marsteller http://www.bmbrussels.eu 37 Square de Meeûs 1000 Brussels Belgium

T: +32-(0)2-743-66-11 email: david.earnshaw@bm.com http://www.bmbrussels.eu

Following the overwhelming support for previous editions of this publication, and the positive responses they have received, Burson-Marsteller Brussels is delighted and proud to publish this, the fourth edition of the European Patient Group Directory. The Directory and its dissemination across the EU are just one indication of the important role that patient groups play today in the development of European Union and member state health policy.

European citizens expect the EU to help address the health challenges they face every day. From pandemic preparedness to patient mobility, comparing and contrasting best practice in healthcare, to raising standards across Europe for prevention, screening and management of Europe’s major diseases, to measures to tackle the scourge of tobacco and the abuse of alcohol, there is much that the EU can do. Indeed, in many areas of health policy, it has become apparent that the scale of the challenges is far too great to be addressed by member states alone. Europe can and should act. We both hope that you find this Directory useful.

David Earnshaw CEO Burson-Marsteller Brussels

Ane Sofie Böhm Nielsen Managing Director Healthcare, Burson-Marsteller Brussels

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EU health policy is facing considerable challenges – not least those caused by the economic crisis and the associated austerity measures. This is forcing several governments to find ways of re-designing health systems to reduce expenditure without compromising the care and treatment of those who need it most.

European Patient Group Directory 2011–2012

For this fourth edition of the European Patient Group Directory, Burson-Marsteller and PatientView have again included extensive information about each group’s presence in Brussels and their campaigns. The new edition further includes 176 new groups and their profiles. As such, we hope it will prove once again to be a useful resource to all those involved in the EU health policy debate, including patients and patient groups themselves, decision and policy makers, officials, companies, NGOs and other stakeholders.

Preface from the author

PatientView Woodhouse Place Upper Woodhouse Knighton Powys, LD7 1NG, UK

T: +44-(0)1547-520-965 email: info@patient-view.com http://www.patient-view.com

Introduction

This 4th edition of the Directory holds overview information on 176 health-oriented NGOs that operate at a pan-European level. Most of the featured organisations were in the previous edition, although a few are fresh to the Directory. A handful of groups in the 2009 Directory have ceased to exist. New categories of information in the 2012 Directory

The 2012 Directory carries five novel types of information about each organisation, including: the organisation’s Brussels-based representatives; campaigns conducted (or supported by) the organisation; a forward-thinking quote summarising plans for 2012 and ahead; the organisation’s links with EU bodies; and current EU-funded projects in which the organisation is participating.

European Patient Group Directory 2011–2012

How the data in the Directory was collected

Just under half of the groups in the Directory contributed to their entries. Information about all of the groups was drawn primarily from their own websites. The data was supplemented by information from the websites of the groups’ members and umbrella organisations, and by other trustworthy online public resources—in particular: —The ‘Patient Group Funding’ page on the GSK website. —The Charity Commission website (for UK-headquartered groups). —The Register of the European Transparency Initiative (ETI), on the Europa website [http://europa.eu/transparency-register/index_en.htm]. The EU’s website, Europa, proved to be of value for three further sets of information in the Directory. The Projects Database of the Executive Agency for Health and Consumers (EAHC) supplied details about the more recent EU-funded projects in which patient groups participate; the DG Health and Consumers site listed pan-European groups in the Directorate-General’s EU Health Policy Forum; and the European Medicines Agency site noted pan-European groups involved in the Agency’s activities. Selection of groups for the Directory

PatientView has developed criteria to indicate whether an organisation is eligible for entry in the Directory (though some degree of personal judgement inevitably comes into play):

Preface from the author

The Directory’s definition of the phrase ‘patient group’ is broad, taking in organisations that specialise in carers, children, consumers, disability, older people, poverty, or research—if the groups are especially concerned with issues of health. The key requirement for inclusion in the Directory is an organisational interest in health advocacy, and a relevance to patients. That said, the Directory excludes healthcare organisations that clearly do not represent the patient perspective (such as medical professional bodies and societies). The Directory considers an organisation ‘pan-European’ if it has members or interests in three or more European countries. ‘Europe’ is defined as EU member states, and countries with borders adjacent to the EU. International (that is, worldwide/global) groups are examined for inclusion on a case-by-case basis. The presence of European member organisations is not enough to guarantee an international group’s entry into the Directory. International groups should either exert a strong presence in Europe, or possess an effective (and, at least, semi-independent) European arm. Most of Europe’s citizens’ and consumers’ groups devote only a small proportion of their energies to healthcare, and have not been placed in the Directory. But exceptions do occur. The first entry in the publication—Rome-based Active Citizenship Network—is an example of a citizens’ group closely linked with healthcare issues. One key quality of any advocacy group is its ability to communicate with the public and policymakers—which is why only groups with a functioning website are listed in the Directory. A final requirement: groups need to be seen to be recently active—and their activities recorded on their websites—to ensure listing in the Directory.

Words of thanks

PatientView would like to thank the individuals and organisations helping in the creation of this Directory, particularly the many patient groups providing support and time, David Earnshaw, Sylvia Staszak, Sofia Marcha of Burson-Marsteller, Mike Kenny for his design input, and the European Health Forum Gastein.

Clive Nead Editor, European Patient Group Directory September 2011

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DG SANCO is an acronym for the European Commission Directorate-General for Health and Consumers. Funding agencies mentioned in the Directory, such as the Executive Agency for Health and Consumers (EAHC), are also part of the European Commission.

European Patient Group Directory 2011–2012

European Commission terminology mentioned in the Directory

Key to data

Name of organisation (Acronym) Primary website Address of headquarters General contact telephone number: Fax number (if used):

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European Patient Group Directory 2011–2012

Organisation’s logo or an image representing an aspect of the organisation’s outlook or activities (images provided by Henry Nead of PatientView, or the National Institutes of Health, or Wikimedia Commons) Activities and campaigns Geographic areas of the organisation’s operation: Europe; parts of Europe; or beyond Europe. Key activities of the organisation: Includes a short description of the organisation and its main aims. Key campaigns of the organisation: Campaigns that are either initiated and run by the organisation, or some other campaign which the organisation particularly supports. Short quotation from the organisation, summarising its objectives for 2012 (and sometimes beyond) Current EU-funded projects in which the organisation is participating (or sometimes leading): Information includes, when available, the title and acronym of project; date of project duration; and funding source.

Contact email for the general public: Senior executive or senior contact person Their position within the organisation (job title) Name of organisation’s representative in Brussels Position or job title of representative in Brussels Email address of representative in Brussels

Members and memberships Number of the organisation’s member groups: Most of the organisations have member groups; a few just maintain informal links with other groups. Countries of the organisation’s member groups: Only member groups based in Europe are included (some groups also have members in Asia, Africa, the Middle East, or worldwide). Groups to which the organisation is affiliated: Organisation’s own membership of umbrella organisations. Current official affiliations with the EU: Links and relations with EU bodies such as the European Commission, European Parliament, European Medicines Agency (EMA), etc. Revenue Most recent yearly revenue: Organisation’s most recent reported annual funding amount/ turnover/revenue, in Euros (other currencies converted at the prevailing exchange rate). Year given when publicly known. Pharmaceutical funding: Sources of funding if from pharmaceutical companies, pharma trade associations, or pharma foundations. Year and names given when publicly known. Main sources of funding: Top two or three (sometimes more) sources of revenue. Year and amounts given when publicly known.

n 11 us s o 20 in el er Jo uss b m r B ve in No th 28

Making Connections Building a dialogue across healthcare

CONFERENCES

Engage Health Alliance Europe is an independent organisation that aims to facilitate interaction between a broad range of stakeholders and organisations interested in improving patient care across Europe. We believe that most challenges in healthcare require collaborative approaches. Our aim is to play a constructive role by providing platforms for debate, consensus, and action-planning—all centred around agendas defined by patients as ‘most important’ Engage2011 London

Engage2011 Brussels

Engage2012 London

‘Patients and industry Building a valuable and legitimate dialogue’

‘The future of healthcare ‘What does value really in Europe - Closing the mean to patients? stakeholder gap’ A new model for pharma’

• Workshops: Exploring key issues and shaping policy for patients • Roundtables: Connecting all relevant stakeholders around specific diseases and healthcare challenges • Membership: Join the conversation and benefit from cross-stakeholder opportunities.

Engage Health Alliance - Europe Ltd • 12 High Street, Stevenage, Herts SG1 3EJ, UK Tel +44 (0)1438 870 066 • e-mail: info@engagehealth.eu

Entries In aphabetical order

Civic and Consumer with Interest in Healthcare

Active Citizenship Network (ACN) http://www.activecitizenship.net Via Flaminia, 53 00196 Rome Italy

Main contact: Teresa Petrangolini Position of main contact: Director

T: +39-(0)6-36-71-81 F: +39-(0)6-36-71-83-33 Email: info@activecitizenship.net

Members and memberships Number of member groups: Partnerships (rather than membership) with 105 organisations from 28 European countries. Countries of member groups: Partner groups in: Austria, Belgium, Bulgaria, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Macedonia, Malta, Netherlands, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, Turkey, UK. Groups to which organisation is affiliated: Cittadinanzattiva. Official on-going affiliations with the EU: Member of the DG SANCO EU Health Policy Forum (EUHPF). Revenue Pharmaceutical funding: 2011: F. Hoffmann-La Roche Ltd, MSD Italia, Novartis Italia-Novartis Farma Spa, Fondazione Eli Lilly per la ricerca medica onlus. Main sources of funding: 2011: pharmaceutical companies; European Commission (DG Education and Culture), Executive Agency for Health and Consumers (EAHC), European Commission (DG Education and Culture), Unicredit Group, Sorgenia.

European Patient Group Directory 2011–2012

Current EU-funded projects: “Future active citizens: volunteering as an exercise of democracy”, 20112012, funded by the Europe for Citizens Programme 2007-2013 of the Education, Audiovisual and Culture Executive Agency (EACEA).

Activities and campaigns Geographic areas of operation: Europe. Key activities: Active Citizenship Network (ACN) is the European network promoted by the Italian non-profit organization Cittadinanzattiva. ACN’s key activity is related to the healthcare service in Europe. The group promotes campaigns on behalf of European patient rights, bringing together health stakeholders to discuss the conditions of citizens in the healthcare services in Europe. ACN strives to gain Europe-wide legal status for patients’ rights. Key campaigns: – “European Patients’ Rights Day” which is a European celebration to highlight the need of patients’ rights in Europe. The celebration is a conference that normally is held in Brussels in the presence of associations’ delegates, representing the interests of patients, the public, policymakers, healthcare providers, legislators, payers, and industry. – “Building Active Citizenship in Europe: an Experience in Mentoring”, with the purpose to test and develop innovative transnational exchange schemes with a view to building long-term partnership between civil society organizations operating in different participating countries. – “Future active citizens: volunteering as an exercise of democracy”, with the main objective of increasing young people’s desire to become active citizens. ACN informs them about the meaning and concrete practice of volunteering, based on the direct experience of civic and voluntary organizations.

Mental Health

ADHD-Europe http://www.adhdeurope.eu

Avenskouter 13 B-9820 Merelbeke Belgium

European Patient Group Directory 2011–2012

T: +32-4-736-172-789 Email: info@adhdeurope.eu Main contact: Rita Bollaert

Activities and campaigns Geographic areas of operation: Europe. Key activities: Advances the rights of people affected by attention-deficit hyperactivity disorder (ADHD) and co-morbid conditions, and advocates with European institutions for its members on the topic of ADHD, with a view to affecting policy. Promotes ADHD awareness and information on a European level, and facilitates the efforts of national and regional ADHD organisations in Europe to acquire funding.

Position of main contact: Coordinator Name of representative in Brussels: Joanne Norris Position of representative in Brussels: Vice-President Contact for representative in Brussels: joanne.norris@adhdeurope.eu

Revenue Most recent yearly revenue: €4,500 (2010), according to the Register of the European Transparency Initiative (ETI). Pharmaceutical funding: ADHD-Europe states that it “does not accept funding from pharmaceutical companies, but will collaborate in the creation of educational materials and projects funded by such companies, provided these are not linked to promotion of a particular product.” Main sources of funding: Membership contributions. Looking for co-funding opportunities from the European Commission.

Members and memberships Number of member groups: 29 member associations from 21 European countries. Countries of member groups: Austria, Belgium (4), Croatia (2), Cyprus, Denmark, Finland, France, Germany (2), Greece (2), Hungary, Ireland (2), Italy, Luxembourg, Malta, Netherlands (2), Norway, Poland, Spain (2), Sweden, Turkey. Groups to which organisation is affiliated: Mental Health Europe (MHE); World Federation of ADHD.

Older People

AGE Platform Europe (AGE) http://www.age-platform.eu

Activities and campaigns Geographic areas of operation: Europe. Key activities: Aims to voice and promote the interests of older people in the EU, and to raise awareness of the issues that concern them the most. Involved in a range of policy and information activities to put older people’s issues on the EU agenda, and increase networking among older people’s groups. Key campaigns: Leads the EU Coalition for the ‘European Year 2012 on Active Ageing and Solidarity Between Generations’. Objectives for 2012 onwards: “AGE will be focusing on the ‘2012 European Year for Active Ageing and Solidarity between Generations’. AGE’s main goal for the Year and beyond is an age-friendly environment across the EU. Our Roadmap details the activities that should be launched in 2012 to achieve an age-friendly EU by 2020.” Current EU-funded projects: Lead role in ‘WellBeing and Dignity of Older People (WeDO)’, 2010-2012, funded by DG Employment, Social Affairs and Inclusion. Partner in the following eight projects. Four projects funded by the Information Communication Technologies Policy Support Programme (ICT-PSP), under the Competitiveness and Innovation Framework Programme (CIP): ‘Atis4All’, 2011-2013; ‘Dreaming’, 2008-2011; ‘eAccess+’, 2010-2013; and ‘Home Sweet Home’, 2010-2012. Three projects funded by the 7th Framework Programme: ‘FuturAGE’, 2009-2011; ‘OASIS’,

2008-2012; and ‘Veritas’, 20102012. Funding and date details for the project ‘European Ambient Assisted Living Innovation Alliance (Aaliance) 2’ not yet available. Members and memberships Number of member groups: Approximately 160 member organisations from 28 European countries. Countries of member groups: Albania, Austria (2), Belgium (16), Bulgaria (3), Cyprus (3), Czech Republic, Denmark, Estonia, Finland (2), France (25), Germany (6), Greece, Hungary (3), Ireland (8), Italy (25), Latvia, Lithuania (3), Malta (2), Netherlands (8), Poland (2), Portugal (3), Slovakia, Slovenia (5), Spain (9), Sweden (2), Switzerland (2), Turkey (2), UK (23). Groups to which organisation is affiliated: European Anti-Poverty Network (EAPN); European Public Health Alliance (EPHA); Platform of European Social NGOs (Social Platform). Current affiliations with the EU: Member of the Steering Group of the European Innovation Partnership (EIP) on Active and Healthy Ageing (run by DG SANCO and DG Information Society and Media). Member of the DG SANCO EU Health Policy Forum (EUHPF). Revenue Most recent yearly revenue: €1.5m (2010). Main sources of funding: 2010: DG Employment, Social Affairs and Equal Opportunities PROGRESS Programme (€1.2m); membership fees and donations (€122,000).

European Patient Group Directory 2011–2012

T: +32-2-280-14-70 F: +32-2-280-15-22 Email: info@age-platform.org Main contact: Anne-Sophie Parent

Position of main contact: Secretary General Name of representative in Brussels: Anne-Sophie Parent Position of representative in Brussels: Secretary General Contact for representative in Brussels: annesophie.parent@age-platform.eu

Rue Froissart 111 1040 Brussels Belgium

HIV/AIDS

AIDS Action Europe (AAE) http://www.aidsactioneurope.org AIDS Action Europe Office Soa Aids Nederland (STI AIDS Netherlands) Keizersgracht 392 1016 GB Amsterdam Netherlands

Email: office@aidsactioneurope.org Main contact: Martine de Schutter Position of main contact: Executive Co-ordinator

European Patient Group Directory 2011–2012

T: +31-(0)20-626-26-69 F: +31-(0)20-627-52-21

Activities and campaigns Geographic areas of operation: Europe. Key activities: Aims to influence AIDS policies at global, European, national, and local levels through advocacy and agenda-setting. Works to ensure that the voices of NGOs are heard by policy makers, European institutions and key stakeholders. Develops linking and learning between NGOs and other stakeholders. Objectives for 2012 onwards: “The European Commission has renewed its commitment to a strategy on combating HIV/AIDS in the EU for 2009-2013. But we need to overcome the funding crisis for most-at-risk groups, for prevention, and for at-risk people in central and Eastern Europe (CEE).”

Members and memberships Number of member groups: 411 member organisations from 33 European countries. Countries of member groups: Albania, Austria, Belgium, Bosnia, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Macedonia, Moldova, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK. Groups to which organisation is affiliated: International Council of AIDS Service Organizations (ICASO). Current affiliations with the EU: Co-chairs the DG SANCO HIV/AIDS Civil Society Forum (CSF). Member of the DG SANCO EU Health Policy Forum (EUHPF). Revenue Most recent yearly revenue: €524,000 (2010). Main sources of funding: EC 2nd EU Public Health Programme (2008-2013) through the Executive Agency for Health and Consumers (EAHC); Aids Fonds; ViiV Healthcare Positive ActioProgramme; Levi Strauss Foundation; MAC AIDS Fund; Open Society Foundations.

Genetic and Rare Diseases

Alfa Europe Federation (AEF) http://www.alphaeurope.eu Lavendelweg 10 45770 Marl Germany

Main contact: Kim Hovmann Position of main contact: Secretary / Communications Officer

T: +49-2365-698260 F: +353-1-452-4341 Email: khovmann@alfa-1.dk

European Patient Group Directory 2011–2012

Activities and campaigns Geographic areas of operation: Europe. Key activities: Democratic federation of alpha-1 associations in Europe. Acts as a European information and resources network for patient-support groups and linked associations, health professionals, institutions, and industry interested in increasing their knowledge of alpha-1 antitrypsin deficiency. Aims to ensure that affected people and their families receive access to social, psychological, and medical support. Key campaigns: Letter-writing campaign to each country’s local MPs to create awareness of alpha-1. Objectives for 2012 onwards: “The 27 EU Member States have committed to creating a National Plan for Rare Diseases in each country. Now is the time for the Federation and members to add the voice of alpha-1 patients to the visionaries looking forward to a healthier world.”

Members and memberships Number of member groups: 12 national member groups (each with 20-250 members) from 12 European countries. Countries of member groups: Austria, Czech Republic, Denmark, France, Germany, Ireland, Italy, Norway, Portugal, Spain, Sweden, UK. Groups to which organisation is affiliated: European Organisation for Rare Diseases (EURORDIS). Current affiliations with the EU: Invited as lay experts by the European Medicines Agency (EMA).

Genetic and Rare Diseases

Alliance Sanfilippo (ASF) http://www.sanfilippo-syndrome.org 52 rue la Boëtie 75008 Paris France

Main contact: Karen Aiach Position of main contact: Chair

T: +33-(0)6-14-03-84-87 F: +33-(0)1-39-90-50-71 Email: karen.aiach@sanfilippo-sas.com / contact@sanfilippo-syndrome.org

Members and memberships Number of member groups: No member associations.

European Patient Group Directory 2011–2012

Revenue Pharmaceutical funding: None. Main sources of funding: Association Française contre les Myopathies (AFM); Fondation Sanfilippo Suisse. Activities and campaigns Geographic areas of operation: Europe. Key activities: Organisation of parents of children affected by mucopolysaccharide disease type III (Sanfillipo syndrome - MPSIII). Aims to develop, fund, and promote research into MPSIII by raising money to fund research throughout Europe. Networks parents and children with a view to sharing experiences and information, and endeavours to improve their quality of life. Key campaigns: Supports ‘Rare Disease Day’ (every February). Objectives for 2012 onwards: “Alliance Sanfilippo is the leader in patient-funded scientific research on MPS III, and plans to continue progress.”

Neurological Conditions

Alzheimer Europe (AE) http://www.alzheimer-europe.org

Activities and campaigns Geographic areas of operation: Europe. Key activities: Aims to improve the care and treatment of Alzheimer patients through intensified collaboration between its member associations. Raises awareness of all forms of dementia by creating a common European platform, harmonising co-operation between Alzheimer organisations throughout Europe. A source of information on all aspects of dementia. Objectives for 2012 onwards: “In the longer term, AE is striving to become the coordination and information centre for all European organisations working in the field of dementia.” Current EU-funded projects: Partner in ‘PharmaCog’, 2010-2015, funded by the 7th Framework Programme.

Members and memberships Number of member groups: 34 member organisations from 30 European countries. Countries of member groups: Austria, Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, Finland, France, Germany, Greece, Ireland, Italy (2), Luxembourg, Malta, Netherlands, Norway, Poland, Portugal, Romania, Slovakia, Slovenia, Spain (2), Sweden (2), Switzerland, Turkey, UK (2). Groups to which organisation is affiliated: Alzheimer’s Disease International (ADI); European Alzheimer’s Disease Consortium (EADC); European Patients’ Forum (EPF). Current affiliations with the EU: Works with the European Alzheimer’s Alliance, a multi-party, multinational body of Members of the European Parliament. Involved in the activities of the European Medicines Agency (EMA). Revenue Most recent yearly revenue: €1.18m (2010). Pharmaceutical funding: 2010: Bayer Healthcare (€310,000); Elan (€20,000); Lilly (€20,000); GSK (€35,000); Janssen-Cilag (€40,000); Lundbeck (€20,000); Novartis (€45,000); Nutricia (€15,000); Pfizer (€50,000). Main sources of funding: 2010: Pharmaceutical companies (€556,000); European Commission (€271,000); member organisations (€181,000); individual donors (€78,000).

European Patient Group Directory 2011–2012

T: +352-29-79-70 F: +352-29-79-72 Email: info@alzheimer-europe.org Main contact: Jean Georges

Position of main contact: Executive Director Name of representative in Brussels: Annette Dumas Position of representative in Brussels: EU Public Affairs Officer Contact for representative in Brussels: annette. dumas@alzheimer-europe.org

145 route de Thionville 2611 Luxembourg

Disability / Older People

AMD Alliance International (AMDAI) http://www.amdalliance.org 6th Floor, City Gate East Tollhouse Hill Nottingham NG1 5SF UK

Email: info@amdalliance.org Main contact: Narinder Sharma Position of main contact: Chief Executive Officer

T: +44-115-935-2100 F: +44-115-935-2001

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: 25 European member groups from 13 European countries. Countries of member groups: Austria, Belgium, Finland, France, Germany (2), Ireland, Italy (5), Lithuania, Netherlands, Poland (2), Spain (2), Switzerland (2), UK (5).

Activities and campaigns Geographic areas of operation: Global (including Europe). Key activities: International organisation dedicated exclusively to macular disease. Strives to bring knowledge, help and hope to individuals and families around the world affected by agerelated macular degeneration (AMD). Generates awareness and understanding of AMD, promotes the importance of education, early detection, knowledge of treatment and rehabilitation options. Key campaigns: Runs a video-film contest about macular disease and its effects. Issued a ‘Global Call to Action to Recognize Wet AMD as a Chronic Disease’. AMDAI’s ‘MD Patient Charter’, a road map for the patient life journey.

Blood Disorders

AntiCoagulation Europe (ACE) http://www.anticoagulationeurope.org PO Box 405 Bromley Kent BR2 9WP UK

Email: anticoagulation@ntlworld.com Main contact: Eve Knight Position of main contact: Director

T: +44-(0)20-8289-6875 F: +44-(0)20-8464-2417

European Patient Group Directory 2011–2012

Revenue Most recent yearly revenue: £186,000/ approximately €212,000 (2010). Pharmaceutical funding: Sanofi-Aventis. Main sources of funding: Sponsors and regular donors; advertising; subscriptions.

Activities and campaigns Geographic areas of operation: Europe. Key activities: Committed to the prevention of thrombosis and the provision of information and support for people already receiving anticoagulant and anti-platelet therapy. Campaigns for excellence and equity of provision of healthcare. Key campaigns: ‘Stop the Clot’. ‘Stroke Prevention on Atrial Fibrillation: a Call to Action’. ‘It’s About Time’. Objectives for 2012 onwards: “ACE aims to continue to work for thrombosis prevention, and to ensure that information is provided for patients with the introduction of the new oral anticoagulants. ACE will work to ensure that guidelines across Europe are implemented in the prevention of stroke-related atrial fibrillation.”

Members and memberships Number of member groups: 3 member groups from 3 European countries. Countries of member groups: France, Ireland, UK. Groups to which organisation is affiliated: International Self-Monitoring Association of Anticoagulated Patients (ISMAAP).

Heart and Circulatory Diseases

Arrhythmia Alliance (A-A) http://www.heartrhythmcharity.org.uk/international-area PO Box 3697 Stratford-Upon-Avon Warwickshire CV37 8YL UK

Main contact: Trudie Lobban Position of main contact: Founder and Chief Executive

T: +44-(0)1789-450-787 Email: info@heartrhythmcharity.org.uk

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: 28 partner associations from 8 European countries. Countries of member groups: Belgium (2), Czech Republic, Germany, Ireland (3), Italy (3), Portugal (4), Sweden, UK (13). Groups to which organisation is affiliated: International Alliance of Patients’ Organizations (IAPO). Activities and campaigns Geographic areas of operation: Europe. Key activities: Coalition of charities, patient groups, patients, carers, medical groups and allied professionals that remain independent, but work together across Europe under the A-A umbrella to promote diagnosis and treatment of arrhythmias. Supports and promotes the aims and objectives of the individual groups. Key campaigns: ‘Restart The Heart’. ‘Know Your Pulse’. Participates in ‘World Heart Rhythm Week’ (every June). Objectives for 2012 onwards: “The partners in AA International work for a united approach, to give greater impact for change, and awareness of arrhythmias on an international scale.”

Revenue Most recent yearly revenue: £1m/approximately €1.1m (2009). Pharmaceutical funding: None. Main sources of funding: Foundations and trusts; UK Department of Health (DoH); a medical device company.

Disability

Association for Research and Training on Integration in Europe (ARFIE) http://www.arfie.info

Activities and campaigns Geographic areas of operation: Europe. Key activities: European network that aims to improve the assistance, social integration and social services available to people with a disability (including people with learning difficulties and psychiatric disorders). Members run training, life skills and placement courses for people with a disability who wish to find work (and also train the staff who work with them). Key campaigns: Participates in ‘European Day of People with Disabilities’ (every December). Objectives for 2012 onwards: “ARFIE plans to continue focusing on the theme of intellectual disability and mental health issues.” Current EU-funded projects: Partner in the second phase of ‘COMCADES’, funded by the Lifelong Learning Programme (Grundtvig Partnership) of the Education, Audiovisual and Culture Executive Agency (EACEA).

Members and memberships Number of member groups: 71 member associations (not all are patient groups) from 18 European countries. Countries of member groups: Austria (3), Belgium (8), Cyprus, Czech Republic, Denmark, Finland, France (21), Germany, Greece, Ireland, Italy (9), Luxembourg (9), Malta, Netherlands, Portugal (3), Romania, Switzerland, UK (7). Revenue Main sources of funding: EU programmes; membership fees.

European Patient Group Directory 2011–2012

T: +32-(0)2-230-66-93 F: +32-(0)2-230-05-60 Email: apemh-euroformat@skynet.be

Main contact: Raymond Ceccotto Position of main contact: President Name of representative in Brussels: Raymond Ceccotto Position of representative in Brussels: President Contact for representative in Brussels: apemh-euroformat@skynet.be

c/o Association des Parents d’Enfants Mentalement Handicapés (Apemh Euroformat) Square Ambiorix 32 bte 47 1000 Brussels, Belgium

Cancer

Association of European Cancer Leagues (ECL) http://www.europeancancerleagues.eu/ 479 Chaussée de Louvain 1030 Brussels Belgium

European Patient Group Directory 2011–2012

T: +32-2-256-2000 F: +32-2-256-2003 Email: info@europeancancerleagues.org

Activities and campaigns Geographic areas of operation: Europe. Key activities: Facilitates the exchange of best practices among ECL members. Promotes capacity building by organising working groups (such as the ECL Patient Support Working Group). Influences the EU agenda on oncology topics through lobbying. Key campaigns: Responsible for reviving ‘European Week Against Cancer (EWAC)’ (every May). Promotes the ‘European Code Against Cancer’, an 11-point guide to cancer prevention through healthy lifestyles and screening. Member of the consortium of the ‘Tobacco-Free Europe’ campaign. Participates in ‘World Cancer Day’ (every February). Objectives for 2012 onwards: “The ECL will focus on the lifestyle messages of the European Code Against Cancer, to seek solutions to cancer prevention through promoting healthy lifestyles and identifying national and European policies that can increase accessibility to healthy choices.” Current EU-funded projects: Partner in ‘TobTaxy (Making Tobacco Tax Trendy)’, 2010-2013, funded by the Health Programme 2008-2013 of the Executive Agency for Health and Consumers (EAHC).

Main contact: Dr Wendy Yared Position of main contact: Director Name of representative in Brussels: Director Position of representative in Brussels: Dr Wendy Yared Contact for representative in Brussels: info@europeancancerleagues.org

Members and memberships Number of member groups: 23 leagues from 19 European countries. Countries of member groups: Belgium (2), Cyprus (2), Czech Republic, Denmark (2), Finland, Greece, Hungary, Iceland, Ireland, Italy, Luxembourg, Netherlands (2), Portugal, Romania, Slovakia, Slovenia, Switzerland, Turkey, UK. Groups to which organisation is affiliated: European Public Health Alliance (EPHA). Current affiliations with the EU: Member of the DG SANCO European Alcohol and Health Forum (EAHF). Member of the DG SANCO EU Health Policy Forum (EUHPF). Coordinates prevention activities for the DG SANCO European Partnership for Action Against Cancer (EPAAC), including ‘European Week Against Cancer (EWAC)’. Provides the secretariat for the European Parliament’s MEPs Against Cancer (MAC) Group. Revenue Most recent yearly revenue: €210,000 (2009). Pharmaceutical funding: 2009, according to the Register of the European Transparency Initiative (ETI): Pfizer (€4,000); Pfizer and Novartis (€9,000 together). Johnson & Johnson, Novartis, and Pfizer supply unrestricted educational grants to consortium members of the ‘TobaccoFree Europe’ campaign. Main sources of funding: 2009, according to the Register of the European Transparency Initiative (ETI): membership fees (€159,000); industry funding, the largest of which came from Garnier (€37,000). 2011: Executive Agency for Health and Consumers (EAHC) (€20,000).

Gastrointestinal

Association of European Coeliac Societies (AOECS) http://www.aoecs.org 4 rue de la Presse 1000 Brussels Belgium T: +352-691-500-961 F: +352-26-889-796 Email: theboard@aoecs.org / secretariatga2011@coeliacmalta.org

Main contact: Jean-Louis Kieffer Position of main contact: Board member Name of representative in Brussels: Jean-Louis Kieffer Position of representative in Brussels: Board member Contact for representative in Brussels: theboard@aoecs.org

Members and memberships Number of member groups: 32 member societies from 28 European countries. Countries of member groups: Andorra, Austria, Belgium (2), Croatia, Cyprus, Czech Republic (2), Denmark, Finland, France, Germany, Greece (2), Hungary, Ireland, Italy, Luxembourg, Malta, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain (2), Sweden, Switzerland, UK. Groups to which organisation is affiliated: European Patients’ Forum (EPF).

Activities and campaigns Geographic areas of operation: Europe. Key activities: Umbrella organisation of European coeliac societies. Co-ordinates and encourages cross-border activities and matters of common interest to members, and promotes exchange of information among members for the benefit of Europeans affected by coeliac disease or dermatitis herpetiformis. Participates in scientific research.

European Patient Group Directory 2011–2012

Revenue Most recent yearly revenue: €55,000 (20102011), according to the Register of the European Transparency Initiative (ETI). Main sources of funding: Membership fees from national coeliac associations.

Reproductive and Sexual Health

ASTRA Network (Central and East European Women’s Network for Sexual and Reproductive Health and Rights) http://www.astra.org.pl ASTRA Secretariat c/o Federation for Women and Family Planning Nowolipie 13/15 00-150 Warsaw Poland

Main contact: Wanda Nowicka Position of main contact: Coordinator

T: +48-22-635-93-95 Email: info@astra.org.pl / federa@astra.org.pl

Members and memberships Number of member groups: 17 member organisations from 9 European countries. Countries of member groups: Albania, Bulgaria (4), Croatia (3), Latvia, Lithuania, Macedonia, Poland, Romania (4), Slovakia.

European Patient Group Directory 2011–2012

Revenue Main sources of funding: 2010-2013: Sigrid Rausing Trust (£135,000/approximately €155,000).

Activities and campaigns Geographic areas of operation: Central and Eastern Europe. Key activities: Regional network of NGOs and individuals. Works for the advancement of sexual and reproductive health and rights as fundamental human rights (SRHR), and advocates for their observance, prioritisation and implementation, both nationally and internationally. Key campaigns: Campaigns to implement the European Commission’s ‘Strategy for Equality Between Women and Men, 2010-2015’. Objectives for 2012 onwards: “We collaborate with the European Commission, European Parliament and the Council of the European Union to ensure that sexual and reproductive health (including HIV/AIDS) is considered a priority in the EU.”

Learning Disability

Autism-Europe (A-E) http://www.autismeurope.org

Activities and campaigns Geographic areas of operation: Europe. Key activities: Organisation representing people with autism-spectrum disorder at European level. Aims to advance the rights of people with autism (and their families), and to help them improve their quality of life. Raises public awareness, and seeks to influence European decision-makers on all issues relating to autism. Key campaigns: Celebrates ‘World Autism Awareness Day (WAAD)’ (every April). Partner in ‘Communication Shutdown’. Objectives for 2012 onwards: “Autism-Europe considers that everyone should have access to up-to-date, evidence-based information on autism. Therefore we offer free videos of presentations made at the 2010 International Congress of Autism-Europe.”

Members and memberships Number of member groups: 76 member associations from 30 European countries. Countries of member groups: Belgium (2), Bulgaria, Croatia (2), Cyprus, Czech Republic (2), Estonia, Finland, France (11), Germany, Greece (2), Hungary (3), Iceland, Ireland, Italy (6), Luxembourg (2), Macedonia, Malta, Netherlands, Norway, Poland (3), Portugal (2), Romania (2), Serbia, Slovakia, Slovenia, Spain (11), Sweden, Switzerland (2), Turkey, UK (10). Groups to which organisation is affiliated: European Coalition for Community Living (ECCL); European Disability Forum (EDF); Platform of European Social NGOs (Social Platform). Revenue Most recent yearly revenue: €194,000 (2010). Main sources of funding: 2010, according to the Register of the European Transparency Initiative (ETI): European Commission (€130,000); membership contributions (€59,000). The EC funding sources include two DirectorateGenerals: Employment, Social Affairs and Equal Opportunities (specifically, the European Community Programme for Employment and Social Solidarity PROGRESS, 2007-2013), and Justice, Fundamental Rights and Citizenship (specifically the ‘For Diversity, Against Discrimination’ initiative).

European Patient Group Directory 2011–2012

T: +32-(0)2-675-75-05 F: +32-(0)2-675-72-70 Email: secretariat@autismeurope.org

Main contact: Evelyne Friedl Position of main contact: President Name of representative in Brussels: Evelyne Friedl Position of representative in Brussels: President Contact for representative in Brussels: secretariat@autismeurope.org

Rue Montoyer 39 1000 Brussels Belgium

Civic and Consumer with Interest in Healthcare

BEUC—the European Consumers’ Organisation http://www.beuc.eu

Rue d’Arlon, 80 Bte 1 1040 Brussels Belgium

European Patient Group Directory 2011–2012

T: +32-2-743-15-90 F: +32-2-740-28-02 Email: consumers@beuc.eu

Activities and campaigns Geographic areas of operation: Europe. Key activities: Federation of independent national consumer organisations in Europe. Seeks to influence the development of policy, and to promote and defend the interests of European consumers. Health-oriented areas of activity include cross-border healthcare, e-health, food information, food hygiene and safety, marketing food to children, patient safety, and pharmaceuticals.

Main contact: Monique Goyens Position of main contact: Director General Name of representative in Brussels: Monique Goyens Position of representative in Brussels: Director General Contact for representative in Brussels: directorsoffice@beuc.eu

Members and memberships Number of member groups: 42 independent national consumer organisations from 31 European countries. Countries of member groups: Austria (2), Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland (2), France (3), Germany (2), Greece (3), Hungary, Iceland, Ireland, Italy (2), Latvia, Luxembourg, Macedonia, Malta, Netherlands, Norway, Portugal, Poland (2), Romania, Slovakia, Slovenia, Spain (2), Sweden, Switzerland, UK (2). Groups to which organisation is affiliated: Consumers International (CI). Current affiliations with the EU: A seat in more than 80 EU working groups, including membership of the European Food Safety Authority (EFSA) Stakeholder Consultative Platform. Member of the DG SANCO EU Health Policy Forum (EUHPF). Involved in the activities of the European Medicines Agency (EMA). Member of the EUnetHTA Joint Action (JA) Stakeholder Forum. Revenue Most recent yearly revenue: €3.85m (2010), according to the Register of the European Transparency Initiative (ETI). Pharmaceutical funding: None. BEUC states that it does not receive funding from companies. Main sources of funding: 2010, according to the Register of the European Transparency Initiative (ETI): European Commission (€2.28m); membership contributions (€1.56m).

Brain Injury

Brain Injured and Families-European Confederation (BIF-EC) http://www.bif-ec.eu 28 Avenue du Parc de Procé 44100 Nantes France

Main contact: Gérard Gueneau Position of main contact: Secretary General

T: +33-240-73-27-42 Email: info@bif-ec.eu

Current EU-funded projects: Partner in ‘Transfer of Good Practices and Knowledge in Social Inclusion of People with Acquired Brain Injury’, 2009-2011, funded by the Human Resources and Employment Operational Programme of the European Social Fund.

European Patient Group Directory 2011–2012

Revenue Main sources of funding: Membership subscriptions; project funding by the European Social Fund.

Activities and campaigns Geographic areas of operation: Europe. Key activities: Common European platform dedicated to raising awareness of brain injury by co-ordinating co-operation between national associations of people with brain injury and their families. Promotes the interests of people with a brain injury, and works to improve the assistance that can be given to them and their families. Advocates to have re-evaluated the number of people in Europe who have a brain injury. Key campaigns: BIF-EC national associations organise ‘European Trauma Cultural Days (ETCD)’, a biannual event bringing together patients suffering from brain injuries and their families. Objectives for 2012 onwards: “We aim to actively participate within the European Disability Forum (EDF) to promote equality of chances and non-discrimination for people with a disability.”

Members and memberships Number of member groups: 18 national associations from 18 European countries. Countries of member groups: Austria, Belgium, Czech Republic, Denmark, Finland, France, Germany, Iceland, Ireland, Italy, Netherlands, Poland, Portugal, Slovenia, Spain, Sweden, Switzerland, UK. Groups to which organisation is affiliated: European Disability Forum (EDF).

Cancer

Cancer Support Group ASBL (CSG) http://www.cancer-support.eu c/o Paule Funken BERL 6/374 European Commission 1040 Brussels Belgium T: +32-2-29-80-741 Email: cancer-support@ec.europa.eu

Main contact: Roy Edwards Position of main contact: President Name of representative in Brussels: Roy Edwards Position of representative in Brussels: President Contact for representative in Brussels: cancer-support@ec.europa.eu

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: No member groups, but numerous individual members. Countries of member groups: Individual members drawn from most of the EU Member States. Current affiliations with the EU: Relations with DG Human Resources and Security.

Activities and campaigns Geographic areas of operation: Europe. Key activities: Self-help group for colleagues of the European institutions. Composed of European Commission staff and former staff and their families who have experienced cancer at first hand, either as cancer patients, or as relatives of cancer patients. Provides extra voluntary information and support for colleagues and their families facing cancer. Key campaigns: Runs ‘CSG Cancer Awareness Day’ (every October). Objectives for 2012 onwards: “The CSG will build upon the theme of the 2011 CSG Action Day, ‘Cancer and the Family’.”

Revenue Most recent yearly revenue: €5,900 (2010). Pharmaceutical funding: None. Main sources of funding: European Commission; donations; merchandise sales.

Neurological Conditions

Cerebral Palsy-European Communities Association (CP-ECA) http://www.icps.org.uk/ c/o Suomen CP-liitto ry Malmin kauppatie 26 00700 Helsinki Finland

Main contact: Johannes Verheijden Position of main contact: Vice Chairman, ICPS

T: +358-400-421-652 Email: johannes@bosk.nl

Activities and campaigns Geographic areas of operation: Europe (and international). Key activities: An international self-help group (the International Cerebral Palsy Society, ICPS) with a notable European element. Promotes the rights and welfare of people with cerebral palsy (CP) and relevant disorders, provides a network for people with CP, parents and professionals to exchange and share the expertise, and encourages new developments in CP-related subject areas. Objectives for 2012 onwards: “CP-ECA will continue to work in the field of disability policy in Europe.”

Members and memberships Number of member groups: 13 member groups from 13 European countries (plus members in non-European countries). Countries of member groups: Belgium, Denmark, Finland, Germany, Greece, Netherlands, Norway, Portugal, Spain, Sweden, Switzerland, Turkey, UK. Groups to which organisation is affiliated: European Disability Forum (EDF).

European Patient Group Directory 2011–2012

Current EU-funded projects: Some member groups are involved in EC-funded projects, such as Cerebral Palsy Greece, which is running ‘Development of Supportive Packages for Parents and Teachers of Children with Cerebral Palsy (CP-PACK)’, 2010-2012, funded by the Lifelong Learning Programme Grundtvig of the Education, Audiovisual and Culture Executive Agency (EACEA).

Cancer

CML Advocates Network http://www.cmladvocates.net

Am Rothenanger 1b 85521 Riemerling Germany T: +49-89-6283-6807 F: +49-89-6283-6808 Email: info@cmladvocates.net

Main contact: Jan Geissler (DE), Jana Pelouchová (CZ), Giora Sharf (IL) Position of main contact: Co-Founders and Coordinators

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: 31 member groups from 25 European countries. Countries of member groups: Bulgaria, Croatia, Czech Republic, Denmark, Estonia, Finland, France (3), Germany (2), Hungary, Ireland, Italy, Kosovo, Latvia, Lithuania, Macedonia, Netherlands, Poland, Portugal (2), Romania, Serbia, Slovenia, Spain, Sweden, Switzerland, UK (3). Groups to which organisation is affiliated: None. Activities and campaigns Geographic areas of operation: Worldwide (founded in Europe). Key activities: Virtual network and an Internet platform for leukaemia (mainly chronic myeloid leukaemia, CML) patient organisations. Acts as a Web-based collaboration nexus for CML patient advocates to share best practice on cancer patient advocacy. Key campaigns: ‘Baveno CML Declaration’, in which signatories call for a non-invasive cure for CML. Objectives for 2012 onwards: “CML Advocates Network relaunched its web community in 2011, and now links into preferred social media channels, offers blog-like comment functionality, and gives advocates and patients new ways to interact with the Network.”

Revenue Most recent yearly revenue: €300. Pharmaceutical funding: None. Main sources of funding: Member patient groups.

Auto-Immune and Immune Diseases / Young People

Coeliac Youth of Europe (CYE) http://www.cyeweb.eu c/o Deutsche Zöliakie-Gesellschaft e.V. Filderhauptstraße 61 70599 Stuttgart Germany

Main contact: Hanna Koponen Position of main contact: General Coordinator (2010-2012), Youth Committee

T: +49-(0)711-45-99-81-0 Email: cye.board@gmail.com

European Patient Group Directory 2011–2012

Revenue Most recent yearly revenue: €5,800 (2010). Main sources of funding: Association of European Coeliac Societies (AOECS); various youth and European funding programmes, such as the Council of Europe’s European Youth Foundation (EYF).

Activities and campaigns Geographic areas of operation: Europe. Key activities: Umbrella organisation of European coeliac youth groups within the Association of European Coeliac Societies (AOECS). Creates programmes and initiatives, such as international summer camps, a network for travelling, and Travel Net, which supplies information on gluten-free food throughout Europe. Key campaigns: ‘A Gluten-Free Hamburger, Please!’, a 2011 web petition aimed at creating cooperation with fast-food companies around Europe. Objectives for 2012 onwards: “CYE will work towards improving life conditions for young people with coeliac disease.”

Members and memberships Number of member groups: 4 youth societies from 4 European countries, plus links with relevant societies from another 7 European countries. Countries of member groups: Bosnia, Finland, France, Germany, Italy, Netherlands, Norway, Serbia, Spain, Sweden, UK. Groups to which organisation is affiliated: Association of European Coeliac Societies (AOECS).

Families and Health

Confederation of Family Organisations in the European Union (COFACE) http://www.coface-eu.org Rue de Londres 17 1050 Brussels Belgium

European Patient Group Directory 2011–2012

T: +32-2-511-41-79 F: +32-2-514-47-73 Email: secretariat@coface-eu.org

Activities and campaigns Geographic areas of operation: Europe. Key activities: International voluntary organisation that promotes family policy, solidarity between generations, and the interests of children within the EU. Links general and single-issue national family organisations. Health is a major subject area. Key campaigns: Involvement in ‘European Year of Volunteering 2011’. Objectives for 2012 onwards: “COFACE plans to concentration on the 2011 European Year on Volunteering, develop relations with the European Parliament, build systematic contacts with EU Presidencies, and step towards the ‘2014 European Year of Families’.” Current EU-funded projects: Partner in two projects: ‘Self-Assessment of Family Carers’ Needs’, 2010-2012, funded by the Lifelong Learning Programme of the Education, Audiovisual and Culture Executive Agency (EACEA); and ‘FLABEL (Food Labelling to Advance Better Education for Life)’, 2008-2011, funded by the 7th Framework Programme.

Main contact: William Lay Position of main contact: Director Name of representative in Brussels: William Lay Position of representative in Brussels: Director Contact for representative in Brussels: secretariat@coface-eu.org

Members and memberships Number of member groups: 51 member organisations from 19 EU Member States. Countries of member groups: Austria, Belgium (7), Bulgaria (2), Cyprus, Czech Republic, Finland, France (13), Germany, Greece (3), Hungary, Ireland, Italy (4), Latvia, Lithuania, Poland, Portugal (3), Romania, Slovakia (2), Spain (6). Groups to which organisation is affiliated: European Brain Injury Society (EBIS); European Disability Forum (EDF); European Housing Forum (EHF); Platform of European Social NGOs (Social Platform). Revenue Most recent yearly revenue: €916,000 (2010), according to the Register of the European Transparency Initiative (ETI). Main sources of funding: 2010, according to the Register of the European Transparency Initiative (ETI): European Commission (€720,000); membership contributions (€68,000). EC funding sources include DG Employment, Social Affairs and Equal Opportunities (specifically, the European Community Programme for Employment and Social Solidarity PROGRESS, 2007-2013), and DG Education and Culture.

Infectious

Confederation of Meningitis Organisations Inc (CoMO) http://www.comoonline.org PO Box 855 West Perth Western Australia 6872

Main contact: Linda Gibbs Position of main contact: Office Manager

T: +61-8-9489-7791 F: +61-8-9489-7705 Email: info@comoonline.org

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: 12 member associations from 10 European countries. Countries of member groups: Czech Republic, France, Germany, Ireland, Italy, Netherlands, Poland, Spain, Sweden, UK (3).

Activities and campaigns Geographic areas of operation: Worldwide. Europe is the largest region within the organisation. Key activities: Brings together patient groups and child health organisations from around the world that are working towards the elimination of meningitis and its related septicaemia. Assists members to be sustainable, influential sources of information and support. Key campaigns: Contributes to ‘World Meningitis Day’ (every April).

Revenue Most recent yearly revenue: Under $530,000/ approximately €373,000 (2010), according to GSK. Pharmaceutical funding: 2011: GSK; Novartis; Pfizer Australia. GSK notes that its 2010 donation of $80,000/approximately €56,000 represented less than 15% of the organisation’s revenue that year. Main sources of funding: Pharmaceutical companies.

Genetic and Rare Diseases

Cystic Fibrosis Europe (CF Europe; CFE) http://www.cfww.org/cfe In den Dauen 6 53117 Bonn Germany

Main contact: Karleen De Rijcke Position of main contact: President

European Patient Group Directory 2011–2012

T: +49-228-98-780-31 F: +49-228-98-780-77 Email: info@cf-europe.info

Activities and campaigns Geographic areas of operation: Europe (and worldwide). Key activities: Federation of national European cystic fibrosis (CF) associations, and a subdivision of Cystic Fibrosis Worldwide. Promotes appropriate medical care for CF patients in Europe, represents and defends their interests, and raises public awareness and understanding of the concerns of CF patients and their families. Key campaigns: Organises European ‘Cystic Fibrosis Awareness Week’ (every November). Objectives for 2012 onwards: “Access to better CF care can only be ensured by building strong local associations and networks. Therefore, CF Europe organises network and capacitybuilding meetings across Europe.”

Members and memberships Number of member groups: 31 member groups from 28 European countries. Countries of member groups: Austria, Belgium, Bulgaria (2), Czech Republic, Denmark, Estonia, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Macedonia, Netherlands (2), Norway, Poland (2), Romania, Serbia, Slovakia, Spain, Sweden, Switzerland, Turkey, UK. Groups to which organisation is affiliated: Cystic Fibrosis Worldwide (CFW); European Organisation for Rare Diseases (EURORDIS). Revenue Pharmaceutical funding: Abbott sponsors the CF Europe and CF Worldwide website. Main sources of funding: Donations by national CF associations. Looks for funding through sponsorship, donations and subsidies.

Cancer

Das Lebenshaus e.V. http://www.daslebenshaus.org

Usa-Straße 1 61231 Bad Nauheim Germany

Main contact: Markus Wartenberg Position of main contact: Director

T: +49-(0)700-4884-0700 / +49-(0)-171-4700-919 F: +49-6032-9492-885 Email: wartenberg@lebenshauspost.org

Members and memberships Number of member groups: 1,200 individual members. Countries of member groups: Austria, Germany, Switzerland (and other European countries). Groups to which organisation is affiliated: European Cancer Patient Coalition (ECPC); Global GIST Network; Sarcoma Patients EuroNet Association.

European Patient Group Directory 2011–2012

Revenue Main sources of funding: Pharmaceutical companies; membership fees.

Activities and campaigns Geographic areas of operation: German-speaking countries of Europe (close cooperation with equivalent groups elsewhere). Key activities: Self-help community of patients, families and medical professionals. Specialises in gastrointestinal stromal tumors (GIST), kidney cancer, and sarcomas. Provides patient information, support and advocacy, encourages research and clinical trials, and increases public awareness of rare cancers. Objectives for 2012 onwards: “Helping people to help themselves will continue to be the motivating force behind Das Lebenshaus.”

Genetic and Rare Diseases

DEBRA International http://www.debra-international.org

Am Heumarkt 27/3 1030 Wein Austria

Main contact: Rainer Riedl Position of main contact: Treasurer

European Patient Group Directory 2011–2012

T: +43-1-876-40-30-0 F: +43-1-876-40-30-30 Email: john.dart@debra.org.uk

Activities and campaigns Geographic areas of operation: International. Key activities: Umbrella organisation for national associations representing people with epidermolysis bullosa (EB). Seeks to ensure that advances in EB research translate into treatments through the development of strategic partnerships with funders and industry. Publishes best-practice guidelines on EB clinical care, and aids in the formation of new EB patient support groups. Key campaigns: Supports ‘Rare Disease Day’ (every February). Helps to organise ‘International Epidermolysis Bullosa Awareness Week’ (every October). Current EU-funded projects: Partner in ‘GENEGRAFT’, 2011-2016, funded by the 7th Framework Programme.

Members and memberships Number of member groups: 24 member organisations from 24 European countries. Countries of member groups: Austria, Belgium, Bosnia, Bulgaria, Croatia, Czech Republic, Finland, France, Germany, Hungary, Ireland, Italy, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK. Groups to which organisation is affiliated: European Disability Forum (EDF); European Patients’ Forum (EPF); Patients Network for Medical Research and Health (EGAN). Current affiliations with the EU: Involved in the activities of the European Medicines Agency (EMA). Revenue Most recent yearly revenue: €37,000 (plus gifts in kind). Pharmaceutical funding: None. Main sources of funding: Membership subscriptions; limited corporate donations.

Disability

Disabled Peoples’ International-Europe (DPI-Europe) http://www.dpi-europe.org Via dei Bizanti, 97 88046 Lamezia Terme Catanzaro, Calabria Italy

Main contact: Jean-Luc Simon Position of main contact: Chair

T: +39-096-8463-499 F: +39-081-8140-692 Email: dpi_europe@dpitalia.org

Members and memberships Number of member groups: 27 member associations from 27 European countries. Countries of member groups: Albania, Belgium, Bulgaria, Croatia, Czech Republic, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Macedonia, Malta, Norway, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Switzerland, Turkey, UK. Groups to which organisation is affiliated: Disabled Peoples International (DPI); European Disability Forum (EDF).

Activities and campaigns Geographic areas of operation: Europe. Key activities: European network of national organisations or assemblies of people with a disability, established to promote human rights of disabled people. Advocates on behalf of the economic and social integration of people with a disability, and empowers and supports organisations of disabled people and their members.

European Patient Group Directory 2011–2012

Revenue Most recent yearly revenue: €286,000 (20092010), according to the Register of the European Transparency Initiative (ETI). Main sources of funding: 2009-2010, according to the Register of the European Transparency Initiative (ETI): public financing (€261,000); membership fees (€8,000).

HIV/AIDS / Public Health

Eurasian Harm Reduction Network (EHRN) http://www.harm-reduction.org Svitrigailos St. 11B Vilnius 03228 Lithuania

Main contact: Asta Minkeviciene Position of main contact: Executive Director

European Patient Group Directory 2011–2012

T: +370-5-2691-600 F: +370-5-2691-601 Email: info@harm-reduction.org

Activities and campaigns Geographic areas of operation: Central and eastern Europe (and Asia). Key activities: Network of organisations that support, develop and advocate for harmreduction approaches in the fields of drugs, HIV, public health and social exclusion. Promotes humane, evidence-based harm-reduction approaches to drug use, with the aim of improving health and protecting human rights at individual, community, and societal level. Objectives for 2012 onwards: “During 20102014, EHRN seeks to help implement non-discriminating policies for drug users and other vulnerable people, and to improve and expand the use of evidence-based interventions and services for them.” Current EU-funded projects: Partner in three projects: ‘Access to Opioid Medication in Europe (ATOME)’, 2009-2014, funded by the 7th Framework Programme; ‘Strengthening Civil Society to Promote the Reduction of Drug-Related Harms (EuroHRN)’, 2010-2011, funded by the DG Justice Drug Prevention and Information Programme; and ‘Identification of Evidence-Based HCV Prevention in Europe for Young Drug Users at Risk’, 2010-2012, also funded by DG Justice.

Members and memberships Number of member groups: Approximately 93 member organisations from 22 European countries (many other individual members). Countries of member groups: Albania (4), Bosnia (4), Bulgaria (6), Croatia (2), Czech Republic (3), Denmark, Estonia (3), Finland, France (2), Hungary (7), Kosovo (2), Latvia (8), Lithuania (6), Macedonia (14), Netherlands (2), Poland (6), Romania (7), Serbia (4), Slovakia, Slovenia (3), Switzerland, UK (6). Groups to which organisation is affiliated: International Drug Policy Consortium (IDPC). Current affiliations with the EU: Member of the DG SANCO HIV/AIDS Civil Society Forum (CSF). Revenue Most recent yearly revenue: Approximately €900,000 (2009). Pharmaceutical funding: Hoffmann-La Roche; Schering Plough. Main sources of funding: 2009: International Council of AIDS Service Organizations (ICASO); Open Society Institute; European Commission (€150,000, or 8% of 2009 income). Funding from the private sector and government is minor.

Genetic and Rare Diseases

euro-Ataxia (European Federation of Hereditary Ataxias) http://www.euro-ataxia.eu c/o Ataxia UK 9 Winchester House Kennington Park Cranmer Road London, SW9 6EJ UK

Main contact: Marco Meinders Position of main contact: Treasurer

T: +44-(0)207-582-1444 Email: marco.meinders@euro-ataxia.eu

Members and memberships Number of member groups: 14 member groups from 11 European countries. Countries of member groups: Denmark, Finland, France (2), Germany, Ireland, Italy, Netherlands (2), Spain, Sweden, Switzerland (2), UK. Groups to which organisation is affiliated: European Disability Forum (EDF); European Federation of Neurological Associations (EFNA); European Organisation for Rare Diseases (EURORDIS); Patients Network for Medical Research and Health (EGAN).

European Patient Group Directory 2011–2012

Revenue Main sources of funding: Member organisations; voluntary subscriptions.

Activities and campaigns Geographic areas of operation: Europe. Key activities: Non-profit organisation formed by national ataxia groups in Europe. Member organisations work together to give people with hereditary ataxia as normal a life as possible. Represents people with hereditary ataxias, encourages research into causes and treatments, and campaigns for treatments to be made available. Objectives for 2012 onwards: “Another six national ataxia groups in Europe are potential members of euro-Ataxia.”

Addiction

Eurocare (European Alcohol Policy Alliance) http://www.eurocare.org 96 Rue des Confédérés 1000 Brussels Belgium

European Patient Group Directory 2011–2012

T: +32-(0)2-736-05-72 Email: info@eurocare.org Main contact: Mariann Skar Position of main contact: Secretary General

Activities and campaigns Geographic areas of operation: Europe. Key activities: Alliance of non-governmental and public-health organisations advocating the prevention and reduction of alcohol-related harm in Europe through effective and evidencebased alcohol policy. Areas of specialisation include alcohol and pregnancy, and road safety. Key campaigns: Supports ‘World Cancer Day’ (every February). Current EU-funded projects: Partner in ‘Transatlantic Civil Society Dialogues EU-US’, 2010-2012, funded by the former DG External Relations.

Name of representative in Brussels: Mariann Skar Position of representative in Brussels: Secretary General Contact for representative in Brussels: mariann.skar@eurocare.org

Members and memberships Number of member groups: 43 organisations from 21 European countries. Countries of member groups: Belgium, Bulgaria, Czech Republic, Denmark (3), Estonia, Finland (3), France, Germany (2), Greece, Ireland (3), Italy (4), Lithuania (2), Netherlands (2), Norway, Poland (2), Portugal (3), Slovenia, Spain (5), Sweden (3), Switzerland, UK (2). Groups to which organisation is affiliated: European Public Health Alliance (EPHA); Global Alcohol Policy Alliance (GAPA). Current affiliations with the EU: Member of the DG SANCO European Alcohol and Health Forum (EAHF). Participates in the DG SANCO Health Policy Forum (EUHPF). Revenue Pharmaceutical funding: None. Main sources of funding: Member organisations’ contributions (staff time or financial), especially Actis of Norway, and the International Organisation of Good Templars (IOGT-NTO) of Sweden. Some project funding from the European Commission.

Carers

Eurocarers (European Association Working for Carers) http://www.eurocarers.org 23 Ranelagh Road Dublin 6 Ireland

Main contact: Frank Goodwin Position of main contact: Secretary

T: +353-86-129-4296 Email: fpgoodwin@eircom.net

European Patient Group Directory 2011–2012

Revenue Main sources of funding: Commercial sponsorship (Tena sponsors website; S.C.A. Hygiene Products AB sponsors a project).

Activities and campaigns Geographic areas of operation: Europe. Key activities: Brings together organisations representing carers. Promotes recognition of carers and carers’ interests, the social inclusion of carers, and the development of services to support carers. Collaborates with other appropriate interest and advocacy groups at national and EU levels. Key campaigns: Supports ‘Citizens’ Initiative’ (one million or more citizens can request EU legislation), ‘European Year of Volunteering 2011’, and ‘European Year of Active Ageing 2012’. Objectives for 2012 onwards: “The role of carers is more crucial than ever, due to demographic changes and challenges to formal health- and social-care services throughout Europe.”

Members and memberships Number of member groups: 50 carers’ organisations and relevant organisations from 22 European countries. Countries of member groups: Belgium (5), Bulgaria (3), Czech Republic, Denmark (2), Estonia, Finland (2), France (2), Germany (2), Greece, Hungary, Ireland (4), Italy (3), Latvia, Lithuania, Malta, Netherlands (3), Romania, Slovakia (3); Slovenia, Spain (2), Sweden (2), UK (8). Current affiliations with the EU: Provides the secretariat to the European Parliament Interest Group on Carers.

Children

Eurochild http://www.eurochild.org

Avenue des Arts 1-2 1210 Brussels Belgium

European Patient Group Directory 2011–2012

T: +32-(0)2-511-70-83 F: +32-(0)2-511-72-98 Email: info@eurochild.org

Activities and campaigns Geographic areas of operation: Europe. Key activities: Promotes the welfare and rights of children and young people in Europe through the building of a network of organisations and individuals working to improve the quality of life of children and young people. Key campaigns: Member of the ‘European Year of Volunteering 2011’ Alliance. Part of an NGO coalition lobbying for the ‘2012 European Year for Active Ageing and Intergenerational Solidarity’. Objectives for 2012 onwards: “Eurochild is committed to the vision of a society for all, shared by members of the NGO Coalition for a ‘2012 European Year for Active Ageing and Intergenerational Solidarity’. We want a society in which people feel empowered, so that they have control over their own well-being.” Current EU-funded projects: Partner in ‘Speak up!’, 2010-2012, funded by the DG Justice 2007-2013 Fundamental Rights and Citizenship Programme.

Main contact: Jana Hainsworth Position of main contact: Secretary General Name of representative in Brussels: Jana Hainsworth Position of representative in Brussels: Secretary General Contact for representative in Brussels: jana.hainsworth@eurochild.org

Members and memberships Number of member groups: 130 member organisations from 32 European countries. Countries of member groups: Albania (3), Austria (2), Belgium (7), Bulgaria (5), Croatia (4), Cyprus (2), Czech Republic (2), Denmark (4), Estonia (2), Finland (6), France (7), Germany (5), Greece (7), Hungary (4), Iceland, Ireland (7), Italy (5), Latvia, Lithuania (2), Luxembourg, Macedonia, Malta (2), Netherlands (4), Poland (3), Portugal (2), Romania (3), Serbia (2), Slovakia, Slovenia (3), Spain (3), Sweden (6), UK (23). Groups to which organisation is affiliated: European Anti-Poverty Network (EAPN); Platform of European Social NGOs (Social Platform). Revenue Most recent yearly revenue: €691,000 (2009). Main sources of funding: 2009: DG Employment, Social Affairs and Equal Opportunities, and DG Justice and Home Affairs (€553,000); membership fees (€109,000).

Mental Health

Euro-Methwork http://www.q4q.nl/euromethwork

c/o Quest for Quality BV Vijzelstraat 77 1017 HG Amsterdam Netherlands

Main contact: Ernst Buning Position of main contact: Coordinator

Members and memberships Number of member groups: An informal network.

Activities and campaigns Geographic areas of operation: Europe. Key activities: Forum for Europeans active in the field of substitution treatment for heroin addiction—practitioners, researchers, and policy-makers, as well as heroin users (and their families/friends). Aims to improve the quality of pharmacotherapy in addiction treatment, and its accessibility. Provides information through publications and a website, offers training, and conducts advocacy.

European Patient Group Directory 2011–2012

T: +31-20-3303-449 F: +31-20-3303-450 Email: info@q4q.nl

Reproductive and Sexual Health

EuroNGOs (European NGOs for Sexual and Reproductive Health and Rights, Population and Development) http://www.eurongos.org Rue Royale 146 1000 Brussels Belgium T: +32-2-250-09-62 F: +32-2-250-09-69 Email: mirja.leibnitz@eurongos.org

Main contact: Mirja Leibnitz Position of main contact: Coordinator Name of representative in Brussels: Mirja Leibnitz Position of representative in Brussels: Coordinator Contact for representative in Brussels: mirja.leibnitz@eurongos.org

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: 29 member organisations from 22 European countries. Countries of member groups: Austria (2), Belgium (2), Bulgaria, Cyprus, Denmark, Finland, France (2), Germany, Hungary, Ireland, Italy, Latvia, Lithuania, Netherlands, Norway, Poland, Portugal, Romania, Spain (2), Sweden, Switzerland (2), UK (3).

Activities and campaigns Geographic areas of operation: Europe and international. Key activities: Membership-based platform for organisations that cooperate in the field of sexual and reproductive health and rights (SRHR). Acts as a facilitator for member NGOs to exchange information and experiences in their areas of concern. Members aim to ensure that the EU implements SRHR policies. Key campaigns: Supports the ‘7 Billion Actions’ campaign. Objectives for 2012 onwards: “By 2012, EuroNGOs will be a strong platform of an increased number of members from the newest EU Member States, cooperating to ensure that SRHR are in EU policies and funding streams.”

Revenue Most recent yearly revenue: €526,000 (2010). Main sources of funding: 2010: Hewlett Foundation (€170,000); MacArthur Foundation (€150,000); Packard Foundation (€184,000); membership fees (€16,000).

Cancer

EUROPA DONNA—the European Breast Cancer Coalition (ED) http://www.europadonna.org Piazza Amendola, 3 Milan 20149 Italy

Main contact: Susan Knox Position of main contact: Executive Director

T: +39-02-3659-2280 F: +39-02-3659-2284 Email: info@europadonna.org

European Patient Group Directory 2011–2012

Revenue Most recent yearly revenue: €480,000 (2010). Pharmaceutical funding: Amgen Europe GmBH; Amgen Inc; Eli Lilly Company; F. Hoffmann-La Roche Ltd; GSK; Merck-Serono; Novartis; Pfizer. GSK points out that its 2010 donation of €50,000 represented 10% of the organisation’s revenue that year. Main sources of funding: 2010: European Commission (€57,000); membership dues (€16,000); reimbursements; Vereniging Zonder Winstoogmerk-Breast Cancer Working Group (VZW-BCWG); foundations/non-profits.

Activities and campaigns Geographic areas of operation: Europe (as defined by the WHO). Key activities: Independent, non-profit organisation of affiliated groups from countries throughout Europe. Works to raise awareness of breast cancer, and to mobilise the support of European women in pressing for improved breast cancer education, appropriate screening, optimal treatment and care, and increased funding for research. Key campaigns: Runs ‘Breast Health Day’ (every October), using Facebook, Twitter, and YouTube. Objectives for 2012 onwards: “Latest ED priorities include implementation of the European Parliament Breast Cancer Resolution, and the ‘European Guidelines for quality assurance in breast cancer screening and diagnosis’ (4th edition), plus accreditation guidelines for breast units and National Breast Cancer registries.”

Members and memberships Number of member groups: 36 member groups from 36 European countries (plus groups from Asian countries). Countries of member groups: Albania, Austria, Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Macedonia, Malta, Monaco, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK. Groups to which organisation is affiliated: European CanCer Organisation (ECCO); European Patients’ Forum (EPF).

Cancer

Europa Uomo—the European Prostate Coalition (EUomo) http://www.europa-uomo.org c/o European School of Oncology (ESO) Via del Bollo 4 20123 Milano Italy

European Patient Group Directory 2011–2012

T: +32-3-338-91-50 F: +32-3-338-91-52 Email: europauomo@skynet.be

Activities and campaigns Geographic areas of operation: Europe. Key activities: European advocacy movement for the fight against prostate cancer, and a European coalition of patients supporting groups for prostate diseases (in general) and prostate cancer (in particular). Objectives for 2012 onwards: “EUomo will be building capacity in central and Eastern Europe, with a regional office in Warsaw under development. EUomo will continue to support the activities of national members, will be active in information/education partnerships, and will pursue the development of centres of excellence.” Current EU-funded projects: Partner in ‘Prostate Research Organisations Network of Early-Stage Training (PRO-NEST)’, 2009-2013, funded by the 7th Framework Programme. Members and memberships Number of member groups: 24 Member organisations from 23 European countries. Countries of member groups: Austria, Belgium, Bulgaria, Cyprus, Czech Republic, Denmark, Finland, France, Germany, Hungary, Ireland, Italy, Lithuania, Netherlands (2), Norway, Poland, Portugal, Romania, Slovakia, Spain, Sweden, Switzerland, UK.

Main contact: Professor Louis Denis Position of main contact: Secretary Name of representative in Brussels: Erik Briers Position of representative in Brussels: Voting Member, Europa Uomo Belgium Contact for representative in Brussels: erikbriers@telenet.be

Groups to which organisation is affiliated: European Association of Urology (EAU); European CanCer Organisation (ECCO); European Cancer Patient Coalition (ECPC); European Cancer Prevention Organisation (ECP); European Platform for Patients’ Organisations, Science and Industry (EPPOSI); European School of Oncology (ESO); European School of Urology (ESU); European Society for Medical Oncology (ESMO); European Society of Oncology Pharmacy (ESOP); European Society for Therapeutic Radiology and Oncology (ESTRO); Organisation of European Cancer Institutes (OECI); WorldWide Prostate Cancer Coalition (WWPCC). Current affiliations with the EU: Participates in the DG SANCO European Partnership for Action Against Cancer (EPAAC). Involved in the activities of the European Medicines Agency (EMA). Revenue Most recent yearly revenue: Approximately €125,000 (2010). Pharmaceutical funding: Amgen; Ferring; GSK; Novartis; Roche; Sanofi-Aventis. All provide project support. GSK notes that it gave €25,000 in 2010 (20% of EUomo’s annual revenue), and €3,400 for EUomo’s Proactive Prostate Coalition Taskforce. Main sources of funding: European Association for Urology (EAU); pharmaceutical companies.

Cancer

europacolon (EC) http://www.europacolon.com 3 Kericuff 22260 Ploezel France

Main contact: Jola Gore-Booth Position of main contact: Founder/CEO

Revenue Most recent yearly revenue: €120,000. Pharmaceutical funding: Abbott Molecular; Bayer Healthcare; Hoffmann-La Roche; MerckSerono. Main sources of funding: Pharmaceutical companies; diagnostic companies; other companies. Application submitted for part funding of the 2nd European Colorectal Cancer Patient Conference, 2012.

Activities and campaigns Geographic areas of operation: Europe. Key activities: European organisation dedicated to colorectal cancer (CRC). Aims to unite patients, carers, healthcare professionals, politicians, the media and the public in the fight against the disease. Raises the profile of colorectal cancer, forms patient advocacy groups throughout Europe to create a colorectal cancer community. Encourages improvements in European standards and in equity of care. Key campaigns: ‘Manifesto for Life—Calls for Action’, colorectal cancer as a key priority for all EU citizens. Objectives for 2012 onwards: “Europacolon will expand its network across Europe, make a success of the first and second European Colorectal Cancer Patient Conferences (Spain, 2011, and the Czech Republic, 2012), raise the europacolon profile in Brussels, and continuing screening workshops in Europe.”

Members and memberships Number of member groups: 10 affiliate members, 8 associate members, and 43 pending affiliate members from 21 European countries. Countries of member groups: Austria, Belgium, Bosnia, Croatia, Cyprus, Czech Republic, France, Finland, Greece, Hungary, Italy, Lithuania, Macedonia, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, UK. Groups to which organisation is affiliated: European CanCer Organisation (ECCO); European Cancer Patient Coalition (ECPC); European School of Oncology (ESO); European Society of Digestive Oncology (ESDO); European Society of Medical Oncology (ESMO); LIVESTRONG; United European Gastroenterology Federation (UEGF). Current affiliations with the EU: Collaborating partner in the DG SANCO European Partnership for Action Against Cancer (EPAAC).

European Patient Group Directory 2011–2012

T: Julia Kennedy: +44-(0)77-6608-4256 Email: info@europacolon.com

Addiction / Mental Health

Europe Against Drugs (EURAD) http://www.eurad.net Rue des Confédérés 96-98 1000 Brussels Belgium

European Patient Group Directory 2011–2012

T: +47-23-21-45-00 F: +47-23-21-45-01 Email: eurad@eurad.net Main contact: Anders Ulstein

Activities and campaigns Geographic areas of operation: Europe (and worldwide). Key activities: Volunteer non-profit drug information network and advocacy organisation that advocates a prevention-andrecovery-oriented drug policy at national and international level. Provides policy-makers, the media, and the public with information on drug problems, prevention, treatment and aftercare. Co-operates with like-minded organisations in the prevention of drug abuse. Objectives for 2012 onwards: “EURAD thinks that prevention and long-term follow-up towards recovery and rehabilitation needs greater emphasis in today’s drug policy agenda, and will concentrate on advocacy to ensure that this becomes the case.”

Position of main contact: Secretary General Name of representative in Brussels: Anders Ulstein Position of representative in Brussels: Secretary General Contact for representative in Brussels: eurad@eurad.net

Members and memberships Number of member groups: Networks with dozens of affiliated organisations from 11 European countries. Countries of member groups: Belgium, Finland, France, Italy, Lithuania, Netherlands, Norway, Romania, Sweden, Switzerland, UK. Groups to which organisation is affiliated: Conference of Non-Governmental Organisations in Consultative Relationship with the United Nations (CoNGO). Revenue Main sources of funding: Donations; membership fees.

HIV/AIDS

European AIDS Treatment Group (EATG) http://www.eatg.org

Activities and campaigns Geographic areas of operation: Europe. Key activities: Community organisation that promotes the interests of people living with HIV/AIDS. Aims for the fastest-possible patient access to state-of-the-art medical products, devices and diagnostic tests that prevent or treat HIV infection, and works to improve the quality of life of people living with HIV/AIDS in Europe. Objectives for 2012 onwards: “EATG has 3 main pillars: science, training and policy. Access to HIV treatment, care and prevention will remain a focus, but co-infections have gained importance during the previous years.” Current EU-funded projects: Partner in two projects: ‘Combined Highly-Active AntiRetroviral Microbicides (CHAARM)’, 20102014, funded by the 7th Framework Programme; and ‘EUROPRISE’, 2007-2012, funded by the 6th Framework Programme.

Members and memberships Number of member groups: Partner individuals and organisations throughout Europe. Groups to which organisation is affiliated: European Platform for Patients’ Organisations, Science and Industry (EPPOSI); European Public Health Alliance (EPHA); World Association of NGOs (WANGO). Current affiliations with the EU: Co-chairs the DG SANCO HIV/AIDS Civil Society Forum (CSF). Member of the DG SANCO EU Health Policy Forum (EUHPF), and the DG SANCO HIV/AIDS Think Tank. Involved in the activities of the European Medicines Agency (EMA). Revenue Most recent yearly revenue: €1.1m (2010). Pharmaceutical funding: 2010: Abbott (€144,000); Avexa (€14,000); BoehringerIngelheim (€40,000); Bristol-Myers Squibb (€101,000); Gilead (€147,000); MSD (€118,000); Roche (€67,000); Tibotec (€78,000); ViiV (€150,000). Main sources of funding: 2010: Pharmaceutical companies; European Commission (approximately €165,000 for projects); Levi Strauss Foundation (€27,000).

European Patient Group Directory 2011–2012

T: +32-2-626-96-40 F: +32-2-644-33-07 Email: office@eatg.org Main contact: Koen Block

Position of main contact: Executive Director Name of representative in Brussels: Koen Block Position of representative in Brussels: Executive Director Contact for representative in Brussels: office@eatg.org

Place Raymond Blyckaerts, 13 1050 Brussels Belgium

Public Health

European Alliance for Access to Safe Medicines (EAASM) http://www.eaasm.eu c/o Butler and Speller 1436 London Road Leigh-on-Sea Essex SS9 2UL UK

Main contact: Mike Isles Position of main contact: Executive Director

Email: enquiries@eaasm.eu

European Patient Group Directory 2011â&#x20AC;&#x201C;2012

Members and memberships Number of member groups: 14 non-funding partner organisations (many of them panEuropean patient groups).

Activities and campaigns Geographic areas of operation: Europe. Key activities: Fights against counterfeit medicines, and promotes patient safety in Europe. Involved in the anti-counterfeiting activities of the European Commission, European Parliament and the WHO. Raises public awareness of the need to reduce consumer exposure to the risks of purchasing medicines online, and debates the patient safety aspect of the parallel trade.

Revenue Pharmaceutical funding: Bayer Healthcare; Boehringer Ingelheim; Eli Lilly & Company; Johnson & Johnson; MSD; Novartis; Nycomed; Pfizer; Wyeth. Main sources of funding: Aegate; Ahura Scientific; Idis.

ÂŠ Burson-Marsteller/PatientView

Neurological Conditions

European Alliance of Neuro-Muscular Disorders Association (EAMDA) http://www.eamda.eu c/o Dru_tvo distrofikov Slovenije Linhartova 1 1000 Ljubljana Slovenia

Email: info@eamda.eu Main contact: Boris Sustarsic Position of main contact: President

T: +386-1472-0500 F: +386-1432-8142

ÂŠ Burson-Marsteller/PatientView

European Patient Group Directory 2011â&#x20AC;&#x201C;2012

Activities and campaigns Geographic areas of operation: Europe. Key activities: NGO whose member organisations work together to give people with neuro-muscular disorders (NMD) as normal a life as possible. Aims to build a strong organisation that represents people with NMD throughout Europe.

Members and memberships Number of member groups: 34 member organisations from 31 European countries. Countries of member groups: Austria, Belgium (2), Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Kosovo, Lithuania, Malta, Moldova, Netherlands, Norway, Poland, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden (2), Switzerland (2), Turkey, UK. Groups to which organisation is affiliated: European Disability Forum (EDF); European Federation of Neurological Associations (EFNA); European Organisation for Rare Diseases (EURORDIS).

Genetic and Rare Diseases

European Association against Leukodystrophies (ELA) http://www.ela-asso.com 2 rue Mi-les-Vignes BP 61024 54521 Laxou Cedex France

Main contact: Jean-Luc Corti Position of main contact: Managing Director

T: +33-(0)3-83-30-93-34 F: +33-(0)3-83-30-00-68 Email: ela@ela-asso.com

European Patient Group Directory 2011–2012

Revenue Most recent yearly revenue: €7.8m (2008). Main sources of funding: 2008: donations (€6m), especially from the French Ministries of Education, and Health, Youth, Sports and Associative Life; sales of merchandise.

Activities and campaigns Geographic areas of operation: Europe. Key activities: Association of parents and patients motivated to fight leukodystrophy. Provides a solidarity network for families, delivering information on leukodystrophy and therapeutic approaches. Supplies families with the services of a psychologist and medical advisor, and sponsors research through its own research foundation. Key campaigns: The ‘Shoes On and Beat the Disease’ initiative has fundraised since 1994. Members and memberships Number of member groups: 5 member organisations from 5 European countries. Over 1,000 individual members. Countries of member groups: Belgium, Italy, Luxembourg, Spain, Switzerland.

Children

European Association for Children in Hospital (EACH) http://www.each-for-sick-children.org c/o Association Pour l’Amelioration des Conditions d’Hospitalisation des Enfants (APACHE) BP 162 92185 Antony Cedex France

Main contact: Dr Sylvie Rosenberg Reiner Position of main contact: Co-ordinator (until mid-2012)

T: +33-(0)1-42-37-61-88 Email: apache.asso@apache-france.org

Members and memberships Number of member groups: 18 member organisations from 17 European countries. Countries of member groups: Austria, Belgium, Croatia, Czech Republic, Finland, France (2), Germany, Hungary, Iceland, Ireland, Italy, Netherlands, Portugal, Slovenia, Sweden, Switzerland, UK. Groups to which organisation is affiliated: Eurochild.

European Patient Group Directory 2011–2012

Activities and campaigns Geographic areas of operation: Europe. Key activities: Umbrella organisation for member associations involved in the welfare of all children before, during, or after a hospital stay. Member associations aim to have the principles of the EACH Charter (setting out the rights of children in hospital) incorporated in health laws, regulations and guidelines in Europe. Key campaigns: Implementing the goals of the ‘EACH Charter’ that are still not in place in Europe. Objectives for 2012 onwards: “Member organisations should concentrate on ensuring the implementation of the EACH Charter throughout all areas where sick children and young people are cared for, both in hospital, and in the community.”

Revenue Most recent yearly revenue: 2009 surplus: €798. Main sources of funding: Membership subscriptions.

Public Health

European Association for Injury Prevention and Safety Promotion (EuroSafe) http://www.eurosafe.eu.com Rijswijkstraat 2 1059 GK Amsterdam Netherlands

Main contact: Wim Rogmans Position of main contact: General Secretary

T: +31-20-511-4513 F: +31-20-511-4510 Email: secretariat@eurosafe.eu.com

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: NGO members from at least 8 European countries. Countries of member groups: Austria, Belgium (4), Germany (2), Greece, Ireland, Netherlands, Norway, UK (4). Groups to which organisation is affiliated: No affiliations, but three main partners: European Commission; UNICEF; World Health Organization (WHO).

Activities and campaigns Geographic areas of operation: Europe. Key activities: Network representing organisations and individuals working to prevent injury and to promote safety. Policies and actions concentrate on child safety, consumer safety, safety for seniors, safety of vulnerable road users, safety in sports, and the prevention of violence and self harm. A platform, advocate, and resource. Key campaigns: ‘Declaration on Injury Prevention and Safety Promotion in the European Union’. ‘Europe Summary Report Card’. Objectives for 2012 onwards: “EuroSafe’s 2011-2013 work plan includes the following four goals: better injury-prevention policies; focused actions on injury priorities in Europe; sharing resources, data and intelligence; and the sustainability of EuroSafe’s leadership role.”

Revenue Most recent yearly revenue: €272,000 (2009). Main sources of funding: 2009: European Commission (€111,000); membership fees. 2011: Executive Agency for Health and Consumers (EAHC) (€85,000).

Disability

European Association of Cochlear Implant Users (EURO-CIU) http://eurociu.implantecoclear.org 16 rue Emile Lavandier 1924 Luxembourg

Main contact: Sari Hirvonen-Skarbö Position of main contact: General Secretary

F: +352-44-22-25 Email: eurociu@implantecoclear.org

Members and memberships Number of member groups: 26 national associations from 21 European countries. Countries of member groups: Austria (2), Belgium, Cyprus, Czech Republic, Denmark (2), Estonia, Finland (2), France, Germany, Greece, Hungary, Italy, Luxembourg, Netherlands, Norway, Portugal, Spain, Sweden (2), Switzerland, Turkey, UK (2). Groups to which organisation is affiliated: European Disability Forum (EDF).

European Patient Group Directory 2011–2012

Activities and campaigns Geographic areas of operation: Europe. Key activities: Represents at European level the interests of deaf or hearing-impaired people who have regained hearing perceptions through a cochlear implant (CI). Raises awareness, disseminates information, promotes communication and information systems friendly to CI users, and encourages research and development in the medical and technical fields of CI. Key campaigns: Supports ‘International Cochlear Implant Day’ (every February).

Revenue Main sources of funding: Medical device companies (Advanced Bionics; Cochlear; MEDEL; Neurelec).

Auto-Immune and Immune Diseases

European Association of Patients Organizations of Sarcoidosis and other Granulomatous Disorders (EPOS) http://www.sarcoidosis.biz Uerdinger Straße 43, 40668 Meerbusch Germany

Main contact: No named contact person.

European Patient Group Directory 2011–2012

T: +49-(0)-21-50-70-59-670 F: +49-(0)-21-50-70-59-671 Email: info@sarcoidosis.biz

Activities and campaigns Geographic areas of operation: Europe. Key activities: Participates in the founding of new national organisations for people with sarcoidosis. Acts to stimulate international research, and provides a forum for the exchange of ideas, experiences and expertise. Prioritises the povision of adequate information for people with sarcoidosis. Members and memberships Number of member groups: 6 national organisations from 6 European countries. Countries of member groups: Belgium, Germany, Ireland, Netherlands, Switzerland, UK. Groups to which organisation is affiliated: European Organisation for Rare Diseases (EURORDIS).

Disability

European Association of Service Providers for Persons with Disabilities (EASPD) http://www.easpd.eu

Activities and campaigns Geographic areas of operation: Europe. Key activities: Promotes service providers for people with a disability. Supplies members with information and services (including networking and exchange possibilities at European, national, regional and local levels). Main objective is to promote the equalisation of opportunities for people with a disability, through the provision of effective and high-quality service systems. Objectives for 2012 onwards: “Our 20092013 strategy: implementation of the ‘UN Convention on the Rights of Persons with Disabilities’ (a core EASPD objective); improved organisational capacity and governance for members; voicing the expectations of members; ensuring dialogue with the EU; and working with key EU networks.” Current EU-funded projects: Partner in the following seven projects, which are all funded by the DG Education and Culture Lifelong Learning Programme (Comenius and Leonardo da Vinci): ‘ImPaCT in Europe’, 2009-2012; ‘Pathways to Inclusion (P2I)’, 2009-2012; ‘Development of a Common Training Programme for ABI Caregivers’, 2009-2011; ‘National Qualification Framework’, 2009-2011; ‘Creating a Common Foundation in Care’, 2009-2011; ‘IBB2’, 2010-2012; and ‘EGDMS’, 2011-2012. Also a partner in ‘INCLUSION’, 2010 onwards, funded by DG Research and Innovation under the 7th Framework Programme; and in ‘ETNA’, 2011-2014, funded by the Information Communication Technologies Policy Support Programme (ICT-PSP), under the Competitiveness and Innovation Framework

Programme (CIP). Partner in a total of nine projects. Members and memberships Number of member groups: 105 member groups (mostly health NGOs) from 24 European countries. Countries of member groups: Austria (9), Belgium (6), Bosnia, Bulgaria (7), Croatia (2), Cyprus (2), Czech Republic (3), Estonia, Finland (3), France (8), Germany (6), Greece (3), Hungary (4), Ireland (8), Italy (3), Lithuania, Macedonia (4), Netherlands (4), Norway (2), Portugal (5), Romania (10), Slovenia (2), Spain, UK (9). Groups to which organisation is affiliated: European Citizen Action Service (ECAS); Platform of European Social NGOs (Social Platform). Current affiliations with the EU: Member of the NGO Liaison Group of the European Economic and Social Committee. Sits on the High-Level Group on Disability of DG Employment, Social Affairs and Equal Opportunities. Participates in the Disability Intergroup of the European Parliament. Member of the Social Economy Intergroup of the European Parliament. Member of the Interest Group on Carers of the European Parliament. Revenue Most recent yearly revenue: €734,000 (2009). Pharmaceutical funding: None. Main sources of funding: 2009, according to the Register of the European Transparency Initiative (ETI): European Commission (€417,000); membership dues (€216,000).

European Patient Group Directory 2011–2012

T: +32-2-282-46-10 F: +32-2-230-72-33 Email: info@easpd.eu

Main contact: Luk Zelderloo Position of main contact: Secretary General Name of representative in Brussels: Luk Zelderloo Position of representative in Brussels: Secretary General Contact for representative in Brussels: info@easpd.eu

Avenue d’Auderghem 63 1040 Brussels Belgium

Disability

European Blind Union (EBU) http://www.euroblind.org 58 Avenue Bosquet 75007 Paris France

Main contact: Birgitta Blokland Position of main contact: Secretary General

European Patient Group Directory 2011–2012

T: +33-1-47-05-38-20 F: +33-1-47-05-38-21 Email: ebu@euroblind.org

Activities and campaigns Geographic areas of operation: Europe. Key activities: Regional body of the World Blind Union (WBU). Promotes and represents the interests of all blind and partially-sighted people in Europe (including those with additional disabilities) with the goal of achieving equal rights as citizens and full participation in society. Key campaigns: Long-running campaign for an international treaty allowing better access to books in accessible formats (braille, large print, audio). The European Parliament voted its support in May 2011. Objectives for 2012 onwards: “EBU will help implementing EU Employment and Disability Strategies, and will work on the EBU legislative database on national accessibility of public places for guide dogs, and on income granted to visually-impaired (VI) people with no sources of revenue.” Current EU-funded projects: Partner in ‘Vision in Enterprise’, 2011-2012, funded by the Lifelong Learning Programme of the Education, Audiovisual and Culture Executive Agency (EACEA).

Members and memberships Number of member groups: 37 member groups from 37 European countries. Countries of member groups: Albania, Austria, Belgium, Bosnia, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Macedonia, Malta, Montenegro, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK. Groups to which organisation is affiliated: European Disability Forum (EDF); Platform of European Social NGOs (Social Platform); World Blind Union (WBU). Revenue Most recent yearly revenue: €612,000 (2010), according to the Register of the European Transparency Initiative (ETI). Main sources of funding: 2010, according to the Register of the European Transparency Initiative (ETI): European Commission (€223,000); member contributions (€312,000); one medical device company (ConvaTec).

Neurological Conditions

European Brain Council (EBC) http://www.europeanbraincouncil.org c/o EFNS Office Department of Pharmacology University of Florence 6 Viale Pieraccini 50139 Florence, Italy

Main contact: Evelyn Sipido Position of main contact: Liaison Officer and Administrator

T: +39-055-43-62-098 F: +39-055-42-71-280 Email: evelyn.sipido@unifi.it

Revenue Most recent yearly revenue: €290,000 (2009). Pharmaceutical funding: 2009: Eli Lilly; Genzyme; Lundbeck; Organon; Pfizer Germany; Sanofi Aventis; Servier; Solvay; Teva; UCB. Main sources of funding: European Commission; pharmaceutical companies; a medical device company (Medtronic); member organisations.

Activities and campaigns Geographic areas of operation: Europe. Key activities: Coordinating council of all European organisations interested in neurology, neurosurgery, psychiatry, basic brain research (neuroscience), plus patient organisations and industry. Interacts with the European Commission, the European Parliament, and the World Health Organization (WHO). Key campaigns: Embarked on a major strategy to designate ‘2014 European Year of the Brain (EYoB)’. Campaigns in the European Parliament on the importance of brain research. Member of the ‘Alliance for MRI’. Objectives for 2012 onwards: “The Hungarian and Polish 2011 European Presidencies have both featured brain diseases as part of their Presidential Priorities. We aim to continue this into future European Council Presidencies. The EYOB is an opportunity; we must make the most of it.”

Members and memberships Number of member groups: 2 European patient organisations (EFNA and GAMIAN-Europe); 5 European professional organisations (AEP, EANS, ECNP, EFNS, and FENS); industrial partners. Groups to which organisation is affiliated: European Coalition for Biomedical Research (ECBR). Current affiliations with the EU: Hopes to partner with DG Research and Innovation on planning the ‘2014 European Year of the Brain (EYOB)’.

European Patient Group Directory 2011–2012

Current EU-funded projects: Partner in ‘Psychosocial Factors Relevant to Brain Disorders in Europe (PARADISE)’, 2010-2012, funded by the 7th Framework Programme.

Neurological Conditions

European Brain Injury Society (EBIS) http://www.ebissociety.org EBIS Secretariat Centre La Braise Rue de la Vigne 56 1070 Brussels Belgium T: +32-2-522-20-03 F: +32-2-523-39-52 Email: ebis.secretariat@skynet.be

Main contact: Katherine Allen Position of main contact: Secretary General Name of representative in Brussels: Katherine Allen Position of representative in Brussels: Secretary General

Contact for representative in Brussels: ebis.secretariat@skynet.be

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: Member organisations and individual members from 16 European countries. Countries of member groups: Austria, Belgium, Denmark, France, Germany, Greece, Ireland, Italy, Luxembourg, Netherlands, Portugal, Slovenia, Spain, Sweden, Switzerland, UK.

Activities and campaigns Geographic areas of operation: Europe. Key activities: European association dedicated to activities that support traumatic brain-injured people and victims of acquired cerebral lesions (covering anoxia, brain tumour, encephalitis, and stroke). Brings together a variety of patient associations and professionals involved in the field of brain injury. Objectives for 2012 onwards: “EBIS believes that actions in favour of head-injured people can only be successful if the essential links between medical, scientific and social efforts are continually strengthened and improved.” Current EU-funded projects: Two EBIS members are partnering in ‘Project: Acquired Brain Injury (ABI)’, 2009-2011, funded by the Lifelong Learning Programme of the Education, Audiovisual and Culture Executive Agency (EACEA).

Revenue Main sources of funding: King Baudouin Foundation; membership fees. The European Commission funds several seminars each year (including a summer school).

Cancer

European CanCer Organisation (ECCO) http://www.ecco-org.eu Avenue E. Mounier 83 1200 Brussels Belgium T: +32-2-775-02-01 F: +32-2-775-02-00 Email: info@ecco-org.eu

Main contact: Michel Ballieu Position of main contact: Chief Executive Officer Name of representative in Brussels: Ingrid van den Neucker Position of representative in Brussels: Head of External Relations Unit Contact for representative in Brussels: ingrid.vandenneucker@ecco-org.eu

Activities and campaigns Geographic areas of operation: Europe. Key activities: Supports the activities of patient advocates and organisations with the aim of helping them to better respond to patients’ needs and wishes. Although largely a clinical and academic-driven body (representing 50,000 experts involved in cancer research, treatment and care), patient groups such as Europa Uomo, Europa Donna and Myeloma Euronet are involved as sustaining members. Key campaigns: ‘European Week Against Cancer’ (every May). Objectives for 2012 onwards: “ECCO continues to expand its outreach and education with biennial Congresses, and with many new initiatives and programmes—such as the ECCO eLEARNING courses, and an online Patient Information section driven by dedicated focus groups in the form of officially-appointed Committees.” Current EU-funded projects: Lead organisation in ‘Eurocancercoms’, 2009-2011, funded by the 7th Framework Programme. Partner in the following three projects also funded by the 7th Framework Programme: ‘European Network for Cancer research in Children and Adolescents

Members and memberships Number of member groups: 24 member organisations. Groups to which organisation is affiliated: Associations Conference Forum (AC Forum); Chronic Disease Alliance (CDA); ecancermedicalscience Foundation; European Cervical Cancer Association (ECCA); European Foundation for Quality in Elearning (EFQUEL); European Public Health Alliance (EPHA); Federation of European and International Associations (FAIB); International Union Against Cancer (UICC).

European Patient Group Directory 2011–2012

(ENCCA)’, 2011 onwards; ‘EurocanPlatform’, 2010-2015; and ‘MIRACLE’, 2010-2014. Partner in ‘Oncovideos’, 2010-2011, funded by the DG Education and Culture Lifelong Learning Programme.

Cancer

European Cancer Patient Coalition (ECPC) http://www.ecpc-online.org 2nd floor, Microbusiness Centre 26 rue de la Loi 1040 Brussels Belgium

European Patient Group Directory 2011–2012

T: +32-(0)-2-88-88-943 Email: info@ecpc-online.org Main contact: Denis Horgan

Activities and campaigns Geographic areas of operation: Mainly Europe. Key activities: Virtual European network of cancer patient organisations. Committed to improving cancer prevention, screening, early diagnosis, and best treatment, and to reducing inequality across the EU. Seeks to ensure that policymakers, politicians, health professionals, the media and the public recognise the serious nature of cancer, and the need for concerted action to reduce death and suffering. Key campaigns: ‘Forum Against Cancer Europe’ (FACE). Objectives for 2012 onwards: “ECPC will strive to ensure that cancer research in the EU addresses the range of needs of cancer patients (of all variants of the disease), and focuses on translation into therapies, all in a way that minimises waste of money, expertise and time.”

Position of main contact: Head of External Affairs Name of representative in Brussels: Denis Horgan Position of representative in Brussels: Head of External Affairs Contact for representative in Brussels: denis.horgan@ecpc-online.org

Members and memberships Number of member groups: 235 full member groups from 28 European countries. Countries of member groups: Austria (4), Belgium (7), Bulgaria (4), Cyprus (3), Czech Republic (4), Denmark (3), Estonia (2), Finland, France (2), Germany (10), Greece (8), Hungary (3), Ireland (3), Italy (54), Latvia (2), Lithuania (5), Luxembourg (2), Malta, Netherlands (27), Poland (11), Portugal (3), Romania (10), Slovakia, Slovenia (2), Spain (6), Sweden (4), Switzerland, UK (52). Groups to which organisation is affiliated: European Platform for Patients’ Organisations, Science and Industry (EPPOSI); Patients Network for Medical Research and Health (EGAN). Current affiliations with the EU: Member of the DG SANCO EU Health Policy Forum (EUHPF). Involved in the activities of the European Medicines Agency (EMA). Member of the EUnetHTA Joint Action (JA) Stakeholder Forum. Revenue Most recent yearly revenue: €411,000 (2009). Pharmaceutical funding: 2010, 8 sustaining partners: Amgen; GSK; Lilly; Merck; Novartis; Pfizer; Sanofi Pasteur MSD. 2009 sustaining partners were each required to give €30,000. GSK notes that its 2010 grant of €35,000 represented 9% of the organisation’s income that year. Main sources of funding: Pharmaceutical companies.

Cancer

European Cervical Cancer Association (ECCA) http://www.ecca.info 121 Rue Jourdan 1060 Brussels Belgium T: +32-2-538-2833 F: +32-2-538-5833 Email: info@ecca.info

Main contact: Philip Davies Position of main contact: Director General Name of representative in Brussels: Philip Davies Position of representative in Brussels: Director General Contact for representative in Brussels: info@ecca.info

Members and memberships Number of member groups: 96 member organisations (not all health NGOs) from 33 European countries. Countries of member groups: Albania, Austria, Belgium, Bosnia, Bulgaria (3), Croatia (5), Cyprus (2), Czech Republic (4), Denmark, Estonia (2), Finland (2), France (5), Germany (3), Greece (3), Hungary, Iceland, Ireland (2), Italy (9), Latvia (2), Lithuania (3), Macedonia (2), Netherlands (2), Norway (3), Poland (3), Portugal (5), Romania (9), Serbia (2), Slovakia, Slovenia (4), Spain (3), Sweden, Turkey (3), UK (6). Revenue Most recent yearly revenue: €609,000 (2010). Pharmaceutical funding: 2010: GSK. GSK notes that its 2010 grant of €150,000 represented about 25% of the organisation’s income that year. Main sources of funding: 2010: sales of the Pearl of Wisdom (€229,000); pharmaceutical companies (€150,000); public donations (€149,000); European Commission (€42,000); medical device company (Becton-Dickinson, €25,000).

Activities and campaigns Geographic areas of operation: Europe (and countries to the east of Europe). Key activities: Network of organisations and individuals from across Europe that have joined forces to raise awareness of cervical cancer and how it can be prevented. Prepares and distributes evidence-based information on the causes of cervical cancer, and on the importance of organised programmes to prevent the disease. Aims its work at the general public, medical professionals, and public health officials. Key campaigns: Founded and continues to run: ‘European Cervical Cancer Prevention Week’ (every January); ‘Pearl of Wisdom Campaign to Prevent Cervical Cancer’; and the ‘Stop Cervical Cancer’ online petition. Objectives for 2012 onwards: “The primary objective of the ECCA beyond 2011 is the development of organised systems for the transfer of knowledge and expertise from Western Europe to Eastern Europe.” Current EU-funded projects: Partner in three projects: ‘Health Economic Modelling of PREvention strategies for Hpv-related Diseases in European Countries (PREHDICT)’,

European Patient Group Directory 2011–2012

2010-2013, funded by the 7th Framework Programme; ‘Development of a Point-of-Care Detection Unit, Microfluidic Chip, and SelfSampling Device for Cervical-Cancer Screening (SelfPOCNAD)’, 2010-2012, also funded by the 7th Framework Programme; and ‘Multi-type Content Repurposing and Sharing in Medical Education (mEducator)’, 2008 onwards, funded by the eContentplus Programme.

Genetic and Rare Diseases

European Chromosome 11q Network (11q Network) http://www.chromosome11.eu Ahornstraße 13 85241 Hebertshausen Germany

Main contact: Gabi Birle Position of main contact: Vice President and Secretary

T: +49-813-127-3387 F: +49-813-127-3545 Email: gabi.birle@chromosome11.eu

Members and memberships Number of member groups: Around 100 families from across Europe. Groups to which organisation is affiliated: Allianz Chronischer Selterner Erkrankungen (ACHSE) e.V.; Eurochromnet; European Organisation for Rare Diseases (EURORDIS); Kindernetzwerk e.V.; Orphanet.

European Patient Group Directory 2011–2012

Revenue Most recent yearly revenue: Under €50,000. Main sources of funding: Donations; membership fees. Activities and campaigns Geographic areas of operation: Europe. Key activities: Support group for patients with chromosome-11 disorders, their families and relatives. Enables parents to make contact, and information to be collected and exchanged. Follows and supports scientific developments regarding chromosome 11q disorders. Objectives for 2012 onwards: “Every other year, we organise a European conference for families and researchers. The event is our major platform to exchange information and experiences. The results of the conference are published.”

Disability

European Coalition for Community Living (ECCL) http://www.community-living.info c/o National Centre for Independent Living Unit 3.40, Canterbury Court 1-3 Brixton Road London, SW9 6DE UK

Main contact: Ines Buli_ Position of main contact: Coordinator

T: +44-(0)20-7587-3982 Email: coordinator@community-living.info

European Patient Group Directory 2011–2012

Revenue Pharmaceutical funding: None. Main sources of funding: 2010: Open Society Mental Health Initiative (OSMHI).

Activities and campaigns Geographic areas of operation: Europe. Key activities: Europe-wide initiative that works towards the social inclusion of people with a disability or a mental health problem by promoting the provision of comprehensive, quality, community-based services as an alternative to institutionalisation. Encourages good practice in community living, and engages in monitoring and advocacy activities at European level. Key campaigns: ‘Free Our People Now!’, a 2011 campaign for deinstitutionalisation. Current EU-funded projects: Partner in two projects: ‘Fundamental Rights of People with Intellectual Disabilities and People with Mental Health Problems’, 2009-2012, funded by the European Union Agency for Fundamental Rights (FRA); and ‘Disability Rights Expanding Accessible Markets (DREAM)’, 2011 onwards, funded by the Marie Curie Initial Training Network Funding Programme of the 7th Framework Programme.

Members and memberships Number of member groups: 57 member organisations from 22 European countries. Countries of member groups: Austria, Belgium (3), Bosnia (3), Bulgaria (5), Croatia (4), Czech Republic, Estonia, Finland, Germany (6), Greece (3), Hungary (3), Ireland (2), Italy, Kosovo (3), Latvia (4), Macedonia, Netherlands (2), Poland, Romania (3), Serbia, Slovakia, UK (7). Groups to which organisation is affiliated: European Network on Independent Living (ENIL).

HIV/AIDS

European Coalition of Positive People (ECPP) http://www.ecpp.co.uk 2 Whitehorse Mews Westminster Bridge Road London, SE1 7QD UK

Main contact: Colin Webb Position of main contact: Executive Director

T: +44-(0)20-7401-9942 F: +44-(0)20-7401-9690 Email: office@ecpp.co.uk

Members and memberships Number of member groups: None. Groups to which organisation is affiliated: European Patients’ Forum (EPF).

European Patient Group Directory 2011–2012

Revenue Most recent yearly revenue: £385,000/ approximately €430,000 (2009). Pharmaceutical funding: 2009: European Federation of Pharmaceutical Industries and Associations (EFPIA); GSK; ViiV.

Activities and campaigns Geographic areas of operation: Europe (and several African countries). Key activities: Self-help organisation for (and of) people living with HIV/AIDS, hepatitis, and tuberculosis. Seeks to establish a democratic and accountable patient voice at European level, and is involved in a number of issues of importance to patients within the EU. Key campaigns: A patient survey on access to information about prescription medicines (results to be used to influence policymakers in the European Parliament).

Healthcare / Public Health

European Community of Consumer Co-operatives (Euro Coop) http://www.eurocoop.coop

Activities and campaigns Geographic areas of operation: Europe. Key activities: Represents the interests of consumer cooperatives and their 23 million consumer-members across 17 European countries to EU institutions. Operates in consumer food policy, environmental and ethical policy, and co-operative enterprises policy. Key campaigns: ‘International Year of Cooperatives 2012’. ‘Fight Against Obesity’ (Database of Initiatives). Objectives for 2012 onwards: “Euro Coop welcomes the priorities set out by the European Commission in the preparation of the next (post-2013) Consumer Policy Strategy. Euro Coop believes that, in spite of financial constraints, the European Consumer Policy should remain a key priority for the EU.”

Members and memberships Number of member groups: 17 member groups from 17 European countries. Countries of member groups: Bulgaria, Cyprus, Czech Republic, Denmark, Estonia, Finland, Germany, Hungary, Italy, Netherlands, Norway, Portugal, Romania, Slovakia, Spain, Sweden, UK. Groups to which organisation is affiliated: Cooperatives Europe [International Cooperative Alliance-European region]. Current affiliations with the EU: Member of the European Food Safety Authority (EFSA) Stakeholder Consultative Platform. Revenue Most recent yearly revenue: €523,000 (2009), according to the Register of the European Transparency Initiative (ETI). Pharmaceutical funding: None. Main sources of funding: 2009, according to the Register of the European Transparency Initiative (ETI): membership contributions (€521,000).

European Patient Group Directory 2011–2012

T: +32-2-285-00-70 F: +32-2-231-07-57 Email: info@eurocoop.coop

Main contact: Rodrigo Gouveia Position of main contact: Secretary General Name of representative in Brussels: Rodrigo Gouveia Position of representative in Brussels: Secretary General Contact for representative in Brussels: rgouveia@eurocoop.coop

Avenue de Tervueren 12, bte3 1040 Brussels Belgium

Heart and Circulatory Diseases

European Congenital Heart Disease Organisation (ECHDO) http://www.echdo.org c/o BVHK Kasinostraße 66 52066 Aachen Germany

Main contact: Hermine Nock Position of main contact: Spokesperson

European Patient Group Directory 2011–2012

T: +49-241-912-332 Email: hermine.nock@bvhk.de

Activities and campaigns Geographic areas of operation: Europe. Key activities: Umbrella organisation formed to represent the interests of children and adults with congenital heart disease. Links parent and patient organisations with professionals. Works to improve care and treatment, and educates about care for adults with congenital heart disease.

Members and memberships Number of member groups: 34 member groups from 25 European countries. Countries of member groups: Austria, Belgium, Bulgaria, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany (2), Greece, Hungary, Iceland, Ireland, Italy (2), Lithuania, Luxembourg, Netherlands, Norway, Poland (2), Romania (2), Slovenia, Spain (3), Sweden, UK (4). Groups to which organisation is affiliated: European Organisation for Rare Diseases (EURORDIS).

Disability

European Co-operation in Anthroposophical Curative Education and Social Therapy (ECCE) http://www.ecce.eu

Activities and campaigns Geographic areas of operation: Europe. Key activities: Represents people with special needs, looking after their interests on a European level. Member organisations provide a wide range of facilities, including education, work, residential care, family support, home help, and out-patient services. Therapies used include medical care and treatment, physiotherapy, and several forms of art therapy. Key campaigns: Participates in the one-million signature ‘European Alliance of Initiatives for Applied Anthroposophy (ELIANT)’ campaign. Objectives for 2012 onwards: “Unfortunately, the 2010 European Disability Strategy does not pay attention to individuals with complex dependency needs (an apparently forgotten set of people). Getting the European Commission to consider people with complex dependency needs must be a spearhead in ECCE’s strategy.”

Members and memberships Number of member groups: 26 member groups from 14 European countries. Countries of member groups: Austria (2), Belgium (3), Czech Republic, Denmark, France (2), Germany (2), Greece, Italy (2), Netherlands (3), Norway, Romania (2), Sweden (2), Switzerland (2), UK (2). Groups to which organisation is affiliated: European Disability Forum (EDF); Platform of European Social NGOs (Social Platform).

European Patient Group Directory 2011–2012

T: +31-30-694-55-40 F: +31-30-694-55-90 Email: info@ecce.eu

Main contact: Adrienne Thier Position of main contact: President Name of representative in Brussels: Adrienne Thier Position of representative in Brussels: President Contact for representative in Brussels: adriennethier@hotmail.com

Utrechtseweg 62 3700 AN Zeist Netherlands

Disability

European Deafblind Network (EDbN) http://www.edbn.org EDbN Secretariat c/o Spanish Federation of Deafblindness C/ Joanot Martorell, 25 local 08014 Barcelona Catalonia, Spain

Main contact: Ricard Lopez Position of main contact: Communication Officer

T: +34-93-331-73-66 Email: rlopez@sordoceguera.com / rlopezct@gmail.com

European Patient Group Directory 2011â&#x20AC;&#x201C;2012

Members and memberships Number of member groups: 16 member organisations from 12 European countries. Countries of member groups: Austria, Bulgaria, Denmark (3), France, Germany, Italy, Netherlands, Slovakia, Slovenia, Spain (2), Sweden, UK (2). Groups to which organisation is affiliated: Deafblind International (DBI); European Disability Forum (EDF). Activities and campaigns Geographic areas of operation: Europe. Key activities: Organisation that brings together families, professionals and deaf-blind people. Committed to campaigning to promote the rights and interests of people who are deaf-blind, and runs an electronic group to share news and information, and to coordinate training and projects of common interest.

ÂŠ Burson-Marsteller/PatientView

Mental Health

European Depression Association (EDA) http://www.edaweb.eu Avenue des Mimosas 57 Woluwe Saint-Pierre 1150 Brussels Belgium T: +32-(0)2-734-29-80 F: +39-(0)3-098-820-61 Email: info@edaweb.eu

Main contact: Dr Vincenzo Costigliola Position of main contact: President Name of representative in Brussels: Dr Vincenzo Costigliola Position of representative in Brussels: President Contact for representative in Brussels: vincenzo@emanet.org

Members and memberships Number of member groups: 19 representatives (mainly individuals) from 19 European countries. Countries of member groups: Austria; Belgium; Croatia; Czech Republic; France; Germany; Greece; Hungary; Italy; Lithuania; Malta; Poland; Portugal; Serbia; Slovakia; Slovenia; Spain; Switzerland; UK.

European Patient Group Directory 2011–2012

Activities and campaigns Geographic areas of operation: Europe. Key activities: Alliance of organisations, patients, researchers and healthcare professionals from across Europe. Raises awareness of the impact of depression on people’s lives, challenges stigma and discrimination, and provides a voice for people who experience depression. Members exchange information and best practices, coordinate pan-European actions, and extend the reach of their campaigns. Key campaigns: Organises ‘European Depression Day’ (every October). Objectives for 2012 onwards: “The WHO reports that, by 2020, depression is set to become the second-biggest health burden after cardiovascular disease — which is why it needs to be high on the EU healthcare agenda. EDA plans to develop a manifesto for change.”

Revenue Main sources of funding: Centro Studi Psichiatrici; European Medical Association (EMA); Centro Lombardo Recuperi Industriali s.r.l.; Grafiche Luvriti.

Disability

European Disability Forum (EDF) http://www.edf-feph.org 35 Square de Meeus 1000 Brussels Belgium T: +32-2-282-46-00 F: +32-2-282-46-09 Email: info@edf-feph.org Main contact: Javier Güemes

Position of main contact: Acting Director (until January 2012) Name of representative in Brussels: Janina Arsenjeva Position of representative in Brussels: Policy and European Parliamentary Officer Contact for representative in Brussels: janina.arsenjeva@edf-feph.org

European Patient Group Directory 2011–2012

Current EU-funded projects: Partner in two projects: ‘Academic Network of European Disability Experts (ANED)’, 2008-2011, funded by the DG Employment, Social Affairs and Inclusion PROGRESS Programme; and ‘Disability Rights Expanding Accessible Markets (DREAM)’, 2011 onwards, funded by the Marie Curie Initial Training Network Funding Programme of the 7th Framework Programme.

Activities and campaigns Geographic areas of operation: Europe. Key activities: Independent NGO that represents the interests of 80 million Europeans with a disability. Monitors EU initiatives, and proposes new legislation to advance the rights of people with a disability. Meets with key decision makers to ensure that disability is one of their top priorities. Key campaigns: ‘Freedom of Movement’. European comprehensive disability-specific legislation. European e-accessibility binding legislation. The ‘UN Convention on the Rights of Persons with Disabilities’. Objectives for 2012 onwards: “We still have to make sure that disability is a priority in the Europe 2020 strategy, and that the EU institutions will include us in all the relevant decision-making processes — especially in the implementation of the ‘UN Convention on the Rights of Persons with Disabilities’.”

Members and memberships Number of member groups: 54 full member organisations (plus 38 associate, 15 ordinary, and 3 observer member groups). Countries of member groups: All European countries. Groups to which organisation is affiliated: European Women’s Lobby (EWL); International Disability Alliance (IDA); Platform of European Social NGOs (Social Platform). Revenue Most recent yearly revenue: €1.65m (2010). Main sources of funding: 2010: European Commission (€950,000); membership fees (€300,000); project funding (€400,000).

Genetic and Rare Diseases

European Down Syndrome Association (EDSA) http://www.edsa.info /http://www.edsa.eu c/o Stichting Down Syndroom (SDS) Hoogeveenseweg 38 Gebouw U 7943 KA Meppel Netherlands

Main contact: Erik de Graaf Position of main contact: General Secretary

T: +31-(0)-522-281-337 Email: erikdegraaf@downsyndroom.nl / info@downsyndroom.nl

European Patient Group Directory 2011–2012

Activities and campaigns Geographic areas of operation: Europe. Key activities: Network of associations for Down syndrome in Europe. Encourages scientific efforts towards improvements in medical care, education, rehabilitation, vocational training, employment, leisure, and independent living for people with Down syndrome. A major goal for the Association is the improvement of the quality of life of people with Down syndrome (and their families). Key campaigns: Supports ‘World Down Syndrome Day’ (every March). Objectives for 2012 onwards: “EDSA is seeking member associations from all of the countries of Europe (whether or not they are in the European Community at this time).”

Members and memberships Number of member groups: 37 member organisations from 25 European countries. Countries of member groups: Austria, Belgium, Bosnia, Croatia, Cyprus, Czech Republic, Denmark, France, Germany, Greece, Hungary, Ireland, Italy, Luxembourg, Malta, Netherlands, Norway, Poland, Portugal, Romania, Slovakia, Spain, Sweden, Switzerland, UK. Groups to which organisation is affiliated: European Disability Forum (EDF).

Learning Disability

European Dyslexia Association (EDA) http://www.eda-info.eu Penzinger Straße 66/13 A-1140 Vienna Austria

Main contact: Michael Kalmár Position of main contact: President

European Patient Group Directory 2011–2012

Email: m.kalmar@utanet.at

Activities and campaigns Geographic areas of operation: Europe. Key activities: Pan-European organisation of dyslexia associations from across Europe. Aims to raise awareness about dyslexia, to make information on the subject available to all, and to encourage research into the cause(s), diagnosis, intervention and prevention of dyslexia. Assists in developing support for dyslexic people. Key campaigns: ‘Books Without Borders’ and ‘Book Famine’, exemptions of copyright for accessible formats at the World Intellectual Property Organization (WIPO). Objectives for 2012 onwards: “The 4th AllEuropean Dyslexia Conference of 2013 is part of EDA’s drive to ensure that every child and adult with dyslexia has the right to access appropriate identification, support, and opportunities in education, training, and employment.” Current EU-funded projects: Two projects in submission at the time of publication of this Directory.

Members and memberships Number of member groups: 37 member organisations from 24 European countries. Countries of member groups: Austria (5), Belgium (2), Croatia, Cyprus (2), Czech Republic (2), Denmark (2), Finland, France (2), Germany, Greece, Ireland, Italy, Lithuania, Luxembourg, Malta, Netherlands (2), Norway, Poland, Portugal (2), Slovenia, Spain (2), Sweden (2), Switzerland, UK (2). Groups to which organisation is affiliated: European Disability Forum (EDF); Patients Network for Medical Research and Health (EGAN). Revenue Main sources of funding: Membership subscriptions; participation in EU projects; conference fees.

Neurological Conditions

European Dystonia Federation (EDF) http://www.dystonia-europe.org 69 East King Street Helensburgh G84 7RE UK

Main contact: Alistair Newton Position of main contact: Executive Director

T: +44-1436-678-799 F: +44-1436-678-799 Email: sec@dystonia-europe.org

European Patient Group Directory 2011–2012

Revenue Pharmaceutical funding: Allergan; Eisai; Ipsen; Merz. Main sources of funding: Pharmaceutical companies; a medical device company; a foundation; membership fees.

Activities and campaigns Geographic areas of operation: Europe. Key activities: Advocates for dystonia patients and their families at European level. Has brought an increasing number of dystonia groups and people together to share their experiences and knowledge. Key campaigns: Supports the designation of ‘2014 European Year of the Brain (EYoB)’. Objectives for 2012 onwards: “A ‘European Year of the Brain’ would bring enormous benefits for dystonia patients. More funding would be available for research, and EU Member Nations would organise events, awareness, and research at the national level.”

Members and memberships Number of member groups: 18 national organisations from 16 European countries. Countries of member groups: Austria, Belgium, Croatia, Denmark, Finland, France, Germany, Ireland, Italy, Netherlands, Norway, Portugal, Spain (2), Sweden, Switzerland, UK (2). Groups to which organisation is affiliated: European Federation of Neurological Associations (EFNA); Patients Network for Medical Research and Health (EGAN).

Reproductive and Sexual Health

European Endometriosis Alliance (EEA) http://endometriosis.org/news/support-awareness/european-endometriosis-alliance/ The EEA states that it is an umbrella “coalition”, and has no formal headquarters (though is based in London, UK).

Main contact: Lone Hummelshoj Position of main contact: Coordinator

T: +44-(0)77-1006-5164 Email: info@endometriosis.org

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: 18 member organisations from 17 European countries. Countries of member groups: Austria, Belgium, Denmark, Finland, France, Germany, Ireland, Italy, Malta, Netherlands, Norway, Poland, Portugal, Spain, Sweden, Switzerland, UK (2).

Activities and campaigns Geographic areas of operation: Europe. Key activities: Umbrella organistion for national endometriosis support organisations in Europe. Members collaborate and provide a panEuropean base from which to help and support the estimated one-in-ten women who live with endometriosis. Key campaigns: Runs ‘Endometriosis Awareness Week’ (every March).

Revenue Pharmaceutical funding: None. Main sources of funding: Advertisements on the endometriosis.org website; donations.

Families and Health

European Family Therapy Association (EFTA) http://www.europeanfamilytherapy.eu EFTA-CIM 32 avenue du Bois Williame 5101 Erpent Namur Belgium T: +32-81-31-04-39 F: +32-81-31-01-76 Email: efta@scarlet.be

Main contact: Fabienne Dardenne Position of main contact: Head of Secretariat Name of representative in Brussels: Jacques Pluymaekers Position of representative in Brussels: General Treasurer

Contact for representative in Brussels: jacques.pluymaekers@gmail.com Members and memberships Number of member groups: 28 member organisations from 27 European countries. Countries of member groups: Austria, Belgium, Bulgaria, Cyprus, Czech Republic, Denmark, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Macedonia, Malta, Netherlands, Norway, Poland, Portugal, Serbia, Spain, Sweden, Switzerland, Turkey, UK.

ÂŠ Burson-Marsteller/PatientView

European Patient Group Directory 2011â&#x20AC;&#x201C;2012

Revenue Main sources of funding: Membership contributions.

Activities and campaigns Geographic areas of operation: Europe. Key activities: Brings together individual practitioners, training institutes, and national family therapy organisations in Europe. Facilitates the exchange of ideas and experience, spreads information about family therapy, conducts training, and promotes research.

Respiratory

European Federation of Allergy and Airways Diseases Patients Associations (EFA) http://www.efanet.org 35 Rue du Congrès 1000 Brussels Belgium

European Patient Group Directory 2011–2012

T: +32-(0)-22-27-27-12 F: +32-(0)-22-18-31-41 Email: info@efanet.org Main contact: Susanna Palkonen

Activities and campaigns Geographic areas of operation: Europe. Key activities: European network of national patient associations specialising in asthma, allergy, and chronic obstructive pulmonary disease (COPD). Combines the activities of the national associations for results at European level, and to improve the health and quality of life of people in Europe with these diseases. EFA member organisations have over 400,000 patient and carer members. Key campaigns: ‘Call to Action on COPD’. ‘Food Allergen Labeling’. Objectives for 2012 onwards: “EFA will be working on member involvement horizontally; on building and executing EFA-owned and -initiated projects; on professional and effective involvement at the European Medicines Agency (EMA); and on fundraising.” Current EU-funded projects: Partner in four projects: ‘Airway Disease Predicting Outcomes through Patient Specific Computational Modelling (AirPROM)’, 2011-2016, funded by the 7th Framework Programme; ‘Unbiased BIOmarkers in PREDiction of respiratory disease outcomes (U-BIOPRED)’, 20082013, partly funded by the 7th Framework Programme; ‘HealthVent’, 2010-2012, funded by the Executive Agency for Health and Consumers (EAHC); and ‘Mechanisms of the Development of ALLergy (MeDALL)’, 2011-2014, funded by the Health Cooperation Work Programme of the 7th Framework Programme.

Position of main contact: Executive Officer Name of representative in Brussels: Susanna Palkonen Position of representative in Brussels: Executive Officer Contact for representative in Brussels: susanna.palkonen@efanet.org

Members and memberships Number of member groups: 34 member organisations from 20 European countries. Countries of member groups: Austria, Belgium (3), Bulgaria, Czech Republic, Denmark, Finland (2), France (3), Germany, Greece, Ireland, Italy (2), Lithuania (3), Netherlands (4), Norway, Poland, Portugal, Slovenia, Sweden (2), Switzerland (2), UK (2). Groups to which organisation is affiliated: European Patients’ Forum (EPF); European Network for Smoking and Tobacco Prevention (ENSP); Global Alliance against Chronic Respiratory Diseases (GARD); Health and Environment Alliance (HEAL); International COPD Coalition (ICC). Current affiliations with the EU: Member of the Patients and Consumers Working Party (PCWP) of the European Medicines Agency (EMA). Revenue Most recent yearly revenue: Approximately €643,000 (2011). Pharmaceutical funding: 2011: ALK Abelló (€55,000); AstraZeneca (€50,000); Boehringer Ingelheim (€50,000); Chiesi (€30,000); GSK (€75,000); Novartis (€75,000); Nycomed (€50,000); Pfizer(€50,000); Stallergenes (€55,000). Main sources of funding: 2011: Pharmaceutical companies (€490,000); DG Research and Innovation and DG SANCO (€73,000); gas manufacturer _ Air Liquide Healthcare (€50,000); membership fees (€30,000).

Families and Health

European Federation of Associations of Families of People with Mental Illness (EUFAMI) http://www.eufami.org

Activities and campaigns Geographic areas of operation: Europe. Key activities: Representative body for family and carer associations throughout Europe. Promotes the interests and wellbeing of people with mental illness, and aims to strengthen the efforts of member associations to improve the support, standard of treatment, care, and quality of life for people with severe mental illness (and their families). Enables member associations to combine efforts, and to act jointly at European level. Defends the human rights and interests of people with severe mental illness.

Members and memberships Number of member groups: 49 member organisations from 24 European countries. Countries of member groups: Austria, Belgium (2), Cyprus (2), Czech Republic, Denmark (3), Finland (2), France, Germany (2), Greece (6), Hungary, Ireland, Italy (5), Lithuania, Malta, Netherlands (2), Norway, Poland (2), Portugal (3), Romania, Slovenia (3), Spain (3), Sweden, Switzerland, UK (3). Groups to which organisation is affiliated: European Disability Forum (EDF); European Patients’ Forum (EPF). Current affiliations with the EU: Member of the DG SANCO EU Health Policy Forum (EUHPF). Revenue Pharmaceutical funding: AstraZeneca; Eli Lilly and Co; Janssen; Pfizer Inc.

European Patient Group Directory 2011–2012

T: +32-16-74-50-40 F: +32-16-74-50-49 Email: info@eufami.org

Main contact: Kevin Jones Position of main contact: Secretary General Name of representative in Brussels: Kevin Jones Position of representative in Brussels: Secretary General Contact for representative in Brussels: secr.general.office@eufami.org

Diestsevest 100 3000 Leuven Belgium

Blood Disorders / Genetic and Rare Diseases

European Federation of Associations of Patients with Haemochromatosis (EFAPH) http://www.european-haemochromatosis.eu 4 rue Paul Demange 78290 Croissy Sur Seine France

Main contact: Dr. Françoise Courtois Position of main contact: General secretary

Email: efaph@gmx.eu

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: 10 member associations from 10 European countries. Countries of member groups: Belgium, France, Germany, Hungary, Iceland, Ireland, Norway, Portugal, Spain, UK. Groups to which organisation is affiliated: European Organisation for Rare Diseases (EURORDIS); European Patients’ Forum (EPF); Health First Europe (HFE). Activities and campaigns Geographic areas of operation: Europe. Key activities: Dedicated to raising public awareness of the condition, and emphasising the importance of prevention, family screening, and early treatment. Supplies the medical profession with valuable information on the subject. Key campaigns: Campaigning for a ‘European Hereditary Haemochromatosis (HH) Day’.

Revenue Most recent yearly revenue: €12,000 (2010). Pharmaceutical funding: Novartis (website sponsorship). Main sources of funding: Annual membership fees; pharmaceutical company.

Gastrointestinal

European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA) http://www.efcca.org

Activities and campaigns Geographic areas of operation: Europe. Key activities: Umbrella organisation representing national patients’ associations that specialise in inflammatory bowel disease (IBD). Aims to improve the wellbeing of the 1.2 million Europeans with Crohn’s and colitis by facilitating the exchange of information, the promotion of cross-border activities, and by encouraging Scientific research. Provides a patient perspective to European healthcare professionals and stakeholders. Key campaigns: EFCCA ‘IMPACT’ survey. Supports ‘World IBD Day’ (every May). Objectives for 2012 onwards: “EFCCA will document regulations in member countries to understand the current situation. We will provide the information to member associations (and relevant authorities), develop standards for healthcare and social security in Europe for people with IBD, and lobby European politicians.”

Members and memberships Number of member groups: 27 member associations from 26 European countries. Countries of member groups: Austria, Belgium (2), Croatia, Cyprus, Czech Republic, Denmark, Finland, France, Germany, Hungary, Iceland, Ireland, Italy, Luxembourg, Malta, Netherlands, Norway, Poland, Portugal, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK. Groups to which organisation is affiliated: European Disability Forum (EDF); European Patients’ Forum (EPF); European Platform for Patients’ Organisations, Science and Industry (EPPOSI); International Alliance of Patients’ Organizations (IAPO); Patients Network for Medical Research and Health (EGAN). Revenue Pharmaceutical funding: Abbott (funding the ‘IMPACT’ survey); Ferring Pharmaceuticals; MSD; Otsuka Pharmaceuticals; Vifor Pharma AG. Main sources of funding: Pharmaceutical companies; members’ contributions; individual supporters.

European Patient Group Directory 2011–2012

T: +32-2-540-84-34 F: +32-2-540-84-34 Email: secretariat@efcca.org

Main contact: Chayim Bell Position of main contact: Secretary Name of representative in Brussels: Luisa Avedano Position of representative in Brussels: Chief Executive Officer Contact for representative in Brussels: secretariat@efcca.org

Rue Vieux Marché aux Grain, 48 1000 Brussels Belgium

Disability

European Federation of Hard of Hearing People (EFHOH) http://www.efhoh.org c/o Hörselskadades Riksförbund Box 6605 113 84 Stockholm Sweden

Main contact: Jan Lamby Position of main contact: General Secretary

European Patient Group Directory 2011–2012

T: +46-8-457-5500 F: +46-8-457-5503 Email: efhoh@hrf.se / jan.lamby.hrf@apertura.se

Activities and campaigns Geographic areas of operation: Europe. Key activities: European organisation of national associations of/for hard-of-hearing and latedeafened people, parents’ organisations, and professional organisations. Represents hard-ofhearing people at European level in dialogue with the European Union, the Members of the European Parliament, and other European authorities. Key campaigns: EFHOH’s pan-European campaign, ‘Subtitling Access in all Audiovisual Material in the EU’. Objectives for 2012 onwards: “One of the top priorities of EFHOH is subtitling of 100% of public TV programmes all over the EU by 2020, with simple technical standards, and consumer friendly rules — part of our emphasis on improving quality of life.”

Members and memberships Number of member groups: 27 member organisations from 19 European countries. Countries of member groups: Austria, Belgium, Croatia, Czech Republic (2), Denmark, Estonia, Finland (2), France, Germany (3), Hungary, Ireland, Netherlands (2), Norway, Slovakia, Slovenia, Sweden, Switzerland (2), Turkey, UK (3). Groups to which organisation is affiliated: European Disability Forum (EDF); International Federation of Hard of Hearing People (IFHOH). Current affiliations with the EU: Invited to attend the European Parliament Disability Intergroup. Revenue Most recent yearly revenue: €10,000 (2009). Pharmaceutical funding: None. Main sources of funding: 2011: Medical device companies (including AnnieS; Bernafon AG; GN Resound; ISOC; Oticon A/S; Phonak AG; Pro Audito Winterthur; Siemens Audiologische Technik GmbH; and Widex APS); membership fees.

Alternative and Complementary Medicines

European Federation of Homeopathic Patients’ Associations (EFHPA) http://www.efhpa.com Chauseé de Bruxelles 132 Box 1 1190 Brussels, Belgium T: +32-2-672-33-51 F: +32-2-672-13-63 Email: info@britishhomeopathic.org

Main contact: Gabriella de Angelis Position of main contact: Secretary Name of representative in Brussels: Jacques Hirsch Position of representative in Brussels: Vice-President Contact for representative in Brussels: jacques.hirsch@brutele.be

Members and memberships Number of member groups: 22 member associations from 15 European countries. Countries of member groups: Austria (2), Belgium (2), Bulgaria, France (4), Germany (2), Greece, Hungary, Iceland, Italy (2), Netherlands, Norway, Poland, Spain, Switzerland, UK. Groups to which organisation is affiliated: European Patients’ Forum (EPF).

European Patient Group Directory 2011–2012

Revenue Main sources of funding: Membership fees.

Activities and campaigns Geographic areas of operation: Europe. Key activities: Represents patients in Europe who use or seek homeopathic treatment. Promotes the harmonisation of the practice of homeopathy in Europe, and advocates its integration into European healthcare. Member local, regional, and national groups share the same ideals about homeopathy. Defends the rights and interests of patients in Europe who use or seek homeopathic treatment. Objectives for 2012 onwards: “EFHPA will be lobbying for harmonisation of the EU Directives pertinent to homeopathic medicines throughout Europe, leading to equal availability of the treatments and medicines.”

Civic and Consumer with Interest in Healthcare

European Federation of National Organisations Working with the Homeless (FEANTSA) http://www.feantsa.org 194 Chaussée de Louvain 1210 Brussels Belgium

European Patient Group Directory 2011–2012

T: +32-253-866-69 F: +32-253-941-74 Email: information@feantsa.org

Activities and campaigns Geographic areas of operation: Europe. Key activities: Federation that brings together the not-for-profit sector working with people who are homeless in Europe. Carries out research, advocacy, and policy activities. Has developed a broad programme of work on health and homelessness, including a magazine on the subject. Key campaigns: ‘Ending Homelessness’. Objectives for 2012 onwards: “FEANTSA will be taking Europe-wide stocktaking of quality citeria in social services with the aim of evaluating the existing frameworks, their nature, and quality dimensions. This mapping exercise will result in our drafting a European Report.”

Main contact: Freek Spinnewijn Position of main contact: Director Name of representative in Brussels: Freek Spinnewijn Position of representative in Brussels: Director Contact for representative in Brussels: freek.spinnewijn@feantsa.org

Members and memberships Number of member groups: 116 member organisations from 29 European countries. Countries of member groups: Austria, Belgium (5), Czech Republic (3), Denmark (7), Estonia (2), Finland (4), France (7), Germany (2), Greece (3), Hungary (6), Ireland (5), Italy (2), Latvia, Lithuania, Luxembourg, Macedonia, Malta, Netherlands, Norway (2), Poland (5), Portugal (7), Romania (2), Slovakia (2), Slovenia (3), Spain (15), Sweden (2), Switzerland, UK (25). Groups to which organisation is affiliated: European Anti-Poverty Network (EAPN); European Housing Forum (EHF); European Public Health Alliance (EPHA); Platform of European Social NGOs (Social Platform). Revenue Main sources of funding: European Commission; members’ contributions.

Neurological Conditions

European Federation of Neurological Associations (EFNA) http://www.efna.net Knights 12 Station Road Billingshurst West Sussex, RH14 9RE UK

Main contact: Amanda Worpole Position of main contact: Administrator

T: +44-(0)-7809-772-962 F: +44-(0)-7809-772-962 Email: information@efna.net

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: 16 affiliated panEuropean patient organisations. Groups to which organisation is affiliated: European Brain Council (EBC). Co-founder of the European Pain Alliance (not formally constituted at the time of publication of this Directory). Current affiliations with the EU: Involved in the activities of the European Medicines Agency (EMA).

Activities and campaigns Geographic areas of operation: Europe. Key activities: Brings together European umbrella organisations of neurological patient advocacy groups in a ‘partnership for progress.’ Aims to improve the quality of life for people with a neurological disorder, promote better access to information, increase public awareness, and enhance the priority given to neurology by policymakers. Key campaigns: Supports designating ‘2014 European Year of the Brain (EYoB)’. Partner in ‘Can You Feel My Pain?’.

Revenue Most recent yearly revenue: Approximately €420,000 (2010). Pharmaceutical funding: 2010: Abbott; Bayer; Celgene; Eli Lilly; F Hoffmann-La Roche; Genus Pharmaceuticals; Johnson & Johnson; Merck Serono; MSD; Norgine; Novartis; Pfizer; SanofiAventis; Solvay; Takeda; Vifor Pharma AG. GSK notes that its 2010 grant of €42,000 represented 10% of the organisation’s revenue that year. Main sources of funding: Pharmaceutical and medical device companies; European Federation of Neurological Societies (EFNS).

Older People

European Federation of Older Persons (EURAG) http://www.eurageurope.org Prinsenhof 6 6666 CB Heteren Netherlands

European Patient Group Directory 2011–2012

T: +31-26-472-3588 F: +31-26-472-3524 Email: jaapvdspek@planet.nl

Activities and campaigns Geographic areas of operation: Europe. Key activities: A non-profit and non-religious organisation that represents millions of older people in Europe. Promotes older people’s quality of life on societal, social, and political levels. Represents older people’s interests at European level, exchanges experiences, and co-ordinates activities, projects, and network initiatives. Key campaigns: Supports ‘Human Rights Day’ (every December). Current EU-funded projects: Partner in ‘Breaking the Taboo (2) – Developing and Testing Tools to Train the Trainer’, 2009-2011, funded by the DG Justice Daphne III Programme.

Main contact: Jaap van der Spek Position of main contact: Secretary General Name of representative in Brussels: Dirk Jarré Position of representative in Brussels: President Contact for representative in Brussels: dirkjarre@aol.com

Members and memberships Number of member groups: 37 member national organisations from 28 European countries. Countries of member groups: Albania, Austria (2), Belgium, Bulgaria, Croatia, Cyprus, Czech Republic (2), Denmark, Estonia (2), Finland, France, Germany (2), Hungary, Iceland (2), Ireland, Italy, Latvia, Lithuania, Luxembourg, Netherlands, Poland (2), Portugal, Romania, Slovakia (2), Slovenia, Spain, Switzerland (2), UK (2). Groups to which organisation is affiliated: European Older People’s Platform (Age); Platform of European Social NGOs (Social Platform). Current affiliations with the EU: Only indirectly, via the two ‘platform’ umbrella groups to which EURAG is affiliated. Revenue Most recent yearly revenue: EURAG notes that it does not give out information on its annual revenue. Pharmaceutical funding: None. Main sources of funding: Membership fees; advertisement banner on website; European Commission project funding.

Children

European Federation of Parents of HearingImpaired Children (FEPEDA) http://www.fepeda.net FEPEDA Secretariat Teijulantie 18 21420 Lieto Finland

Main contact: Sari Paloposki Position of main contact: Head of Secretariat

T: +358-40-7589-539 Email: sari.paloposki@pp1.inet.fi

Members and memberships Number of member groups: 20 member associations from 18 European countries. Countries of member groups: Austria, Belgium (2), Bulgaria, Czech Republic, Denmark, Estonia, Finland, France, Germany (2), Ireland, Italy, Lithuania, Luxembourg, Netherlands, Poland, Portugal, Spain, Sweden. Groups to which organisation is affiliated: European Disability Forum (EDF).

ÂŠ Burson-Marsteller/PatientView

Activities and campaigns Geographic areas of operation: Europe. Key activities: Represents associations of parents and friends of deaf and hard-of-hearing children at a European level. Brings together national associations of parents of hearing-impaired children, encourages cooperation and the exchange of information, and works to improve the quality of life of deaf and hearing-impaired children and their families.

European Patient Group Directory 2011â&#x20AC;&#x201C;2012

Revenue Main sources of funding: Membership fees.

Alternative and Complementary Medicines

European Federation of Patients’ Associations for Anthroposophic Medicine (EFPAM) http://www.efpam.eu La Commanderie 2 Rue de l’Orient 10140 Amance France

Email: colette.pradelleapma@wanadoo.fr Main contact: Colette Pradelle Position of main contact: Secretary

European Patient Group Directory 2011–2012

T: +33-6-77-08-28-47 F: +33-1-40-47-03-53

Activities and campaigns Geographic areas of operation: Europe. Key activities: Represents the interests of patients who want to use anthroposophic medicine together with (or instead of) other medical treatments. Lobbies European, international and national institutions with the aim of improving the affordability and availability of anthroposophic medicine and its products and services. Objectives for 2012 onwards: “EFPAM wishes to see an increased availability of anthroposophic remedies throughout the European Union, and any existing legal impediments removed.”

Members and memberships Number of member groups: 15 member associations from 15 European countries. Countries of member groups: Austria, Belgium, Denmark, Finland, France, Germany, Iceland, Italy, Netherlands, Norway, Romania, Spain, Sweden, Switzerland, UK. Groups to which organisation is affiliated: European Public Health Alliance (EPHA); International Coordination of Anthroposophic Medicine (IKAM); corresponding member of the European Coalition on Homeopathic and Anthroposophic Medicinal Products (ECHAMP). Revenue Most recent yearly revenue: €10,000. Pharmaceutical funding: None. Main sources of funding: Membership fees; sponsorship.

Skin

European Federation of Psoriasis Associations (EUROPSO) http://www.europso.eu Kimwierde 420 1353 ez Almere Netherlands

Main contact: Ronan Farrelly Position of main contact: Secretary

T: +31-365-313-052 Email: andre.cats@kpnmail.nl / ronan.psoriasis@ gmail.com

Revenue Pharmaceutical funding: 2010: Janssen-Cilag; Schering-Plough. Main sources of funding: Pharmaceutical companies; membership fees.

Activities and campaigns Geographic areas of operation: Europe. Key activities: Umbrella organisation that functions as an ambassador and negotiator for psoriasis patient associations in Europe. Actions are directed particularly at supra-national-level health authorities and related organisations, and at health professionals, associations and companies, as well as the media. Raises awareness of the psycho-social, medical, and financial needs of psoriasis patients. Key campaigns: Supports ‘World Psoriasis Day’ (every October). Objectives for 2012 onwards: “EUROPSO will be working to get a stronger position for psoriasis patients.”

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: 20 member associations from 20 European countries. Countries of member groups: Belgium, Bulgaria, Czech Republic, Denmark, Estonia, Finland, France, Germany, Iceland, Ireland, Netherlands, Norway, Poland, Portugal, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey. Groups to which organisation is affiliated: International Federation of Psoriasis Associations (IFPA).

Disability / Public Health

European Federation of Road Traffic Victims (FEVR) http://www.fevr.org 354 rue de Neudorf 2222 Luxemburg

European Patient Group Directory 2011–2012

T: +352-2643-2121 F: +352-2643-2243 Email: jeannot.mersch@fevr.org

Activities and campaigns Geographic areas of operation: Europe. Key activities: Federation of national European associations of road traffic victims (including the families of people killed or disabled). Aims to increase awareness at European level of the scale of road traffic accidents, and to stress the importance of measures and changes of behaviour that could reduce accidents. Works for the prevention of crashes, and strengthens contacts and collaboration between road victim associations. Key campaigns: Issued an action plan for the ‘UN Decade of Action (DOA) for Road Safety 2011-2020’. Promotes ‘World Day of Remembrance for Road Traffic Victims’ (every November). Participated in the WHO May 2009 ‘NGO Brussels Declaration’, which offers 33 recommendations to improve road safety. Objectives for 2012 onwards: “FEVR would like to see road crash victims treated similarly to the victims of crime and violence.”

Main contact: Jeannot Mersch Position of main contact: President Name of representative in Brussels: Jeannot Mersch Position of representative in Brussels: President Contact for representative in Brussels: president@fevr.org

Members and memberships Number of member groups: 20 member organisations from 16 European countries. Countries of member groups: Belgium (2), Croatia, France, Greece (2), Ireland, Italy (2), Luxembourg, Netherlands (2), Poland, Portugal, Romania, Slovenia, Spain, Switzerland, Turkey, UK. Groups to which organisation is affiliated: United Nations Road Safety Collaboration. Revenue Most recent yearly revenue: €5,300 (2010), according to the Register of the European Transparency Initiative (ETI). Main sources of funding: 2010, according to the Register of the European Transparency Initiative (ETI): partner/sponsor donations (€2,000); membership fees (€3,300).

Carers

European Federation of Unpaid Parents and Carers at Home (FEFAF) http://www.fefaf.be

Activities and campaigns Geographic areas of operation: Europe. Key activities: Umbrella organisation of national or regional associations of people caring for dependent relatives. Represents and defends at EU level the interests of individuals who choose to prioritise the care of their children, or their older or disabled relatives. Key campaigns: Campaigning for ‘2012 European Year for Active Ageing and Intergenerational Solidarity’. Objectives for 2012 onwards: “Lobbying will focus around themes that are not new, but still relevant, including: recognition of unpaid family work (the caring); the status of carers; equal opportunities; leave to reconcile work and family life; and the role of civil society in the workings of the EU.”

Members and memberships Number of member groups: 20 national associations and federations from 15 European countries. Countries of member groups: Austria, Belgium (3), France, Germany, Hungary, Ireland, Italy (2), Luxembourg, Poland, Romania, Slovakia (2), Spain (2), Sweden, Switzerland, UK. Groups to which organisation is affiliated: European Women’s Lobby (EWL); Platform of European Social NGOs (Social Platform).

European Patient Group Directory 2011–2012

T: +32-2-771-23-34 F: +32-2-771-23-34 Email: info@fefaf.be

Main contact: Marielle Helleputte Position of main contact: Secretary General Name of representative in Brussels: Marielle Helleputte Position of representative in Brussels: Secretary General Contact for representative in Brussels: info@fefaf.be

Avenue Père Damien 76 1150 Brussels Belgium

Children / Families and Health

European Foundation for the Care of Newborn Infants (EFCNI) http://www.efcni.org Wuermanger 5 85757 Karlsfeld Germany

Main contact: Silke Mader Position of main contact: Chairwoman of the Executive Board

European Patient Group Directory 2011–2012

T: +49-(0)81-31-90-85-59 F: +49-(0)81-31-61-43-11 Email: info@efcni.org

Activities and campaigns Geographic areas of operation: Europe. Key activities: Pan-European organisation representing the interests of pre-term infants and their families. Gathers together parents and medical professionals from different disciplines, with the common goal of improving the longterm health of newborn infants by ensuring the best possible prevention, treatment, care and support. Key campaigns: ‘Jeder Tag Zählt’ [‘Every Day Counts’]. ‘Ene, Mene, Mini’, a German webportal. ‘Too Little, Too Late? Why Europe should do more for preterm infants’, a European benchmarking report. Participates in ‘International Prematurity Awareness Day’ (every November). Objectives for 2012 onwards: “About one-in-ten babies (half a million) are born prematurely each year in Europe, and the number is increasing. EFCNI unites the voices for newborn infants across Europe, and proposes a vision of every child born healthy and receiving the best possible care.”

Members and memberships Number of member groups: 40 from 23 European countries. Countries of member groups: Austria, Belgium, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Ireland, Italy, Lithuania, Netherlands, Norway, Poland, Portugal, Serbia, Spain, Sweden, Switzerland, Turkey, UK. Groups to which organisation is affiliated: Ausbildungszentrum für Laktation und Stillen (IBCLC); Ausgezeichnete Patientenversorgung; Council of International Neonatal Nurses (COINN); EuroNeoNet/EuroNeoStat; European Critical Care Foundation (ECCF); European Society for Neonatology (ESN); German Neonatal Network (GNN); Gesellschaft für Neonatologie und Pädiatrische Intensivmedizin (GNPI); IPOKRaTES; Neobrain; Union of European Neonatal and Perinatal Societies (UENPS). Revenue Pharmaceutical funding: Abbott supported EFCNI national parents’ organisations in celebrating ‘International Prematurity Awareness Day 2010’. Ferring Arzneimittel GmbH supported EFCNI’s German initiative ‘Jeder Tag Zählt’.

Genetic and Rare Diseases

European Galactosaemia Society (EGS) http://www.galactosaemia.com c/o Jeroen and Maaike van Kempen Zandoogjelaan 4 5691 RJ Son Netherlands

Main contact: Maaike van Kempen Position of main contact: Secretary

T: +31-499-477-509 F: +31-499-464-383 Email: secretary@galactosaemia.eu

ÂŠ Burson-Marsteller/PatientView

Activities and campaigns Geographic areas of operation: Europe. Key activities: Support group for people with the very rare metabolic disease galactosaemia. Shares information, promotes awareness, and encourages European research into the disease. Lobbies for better disclosure in the labelling of foods and pharmaceuticals, and for changes in European law which affect the galactosaemic patient.

European Patient Group Directory 2011â&#x20AC;&#x201C;2012

Members and memberships Number of member groups: 13 member associations from 13 European countries. Countries of member groups: Austria, Belgium, Denmark, Estonia, France, Germany, Ireland, Italy, Netherlands, Norway, Spain, Switzerland, UK. Groups to which organisation is affiliated: None.

Genetic and Rare Diseases

European Gaucher Alliance (EGA) http://www.eurogaucher.org c/o Gauchers Association 3 Bull Pitch Dursley Gloucestershire, GL11 4NG UK

Main contact: Jeremy Manuel Position of main contact: Chairman

T: +44-1453-549-231 Email: jeremy.manuel@eurogaucher.org

European Patient Group Directory 2011â&#x20AC;&#x201C;2012

Members and memberships Number of member groups: 7 member organisations from 7 European countries. Countries of member groups: Austria, Bulgaria, France, Germany, Italy, Netherlands, UK. Groups to which organisation is affiliated: European Working Group on Gaucher Disease (EWGGD).

Activities and campaigns Geographic areas of operation: Europe (and worldwide). Key activities: Alliance of Gaucher disease patient groups throughout Europe. Represents the interests of Gaucher patients to European and international organisations, facilitates the activities of the European Working Group on Gaucher Disease (EWGGD), and provides information and encouragement to groups of individuals representing Gaucher patients throughout Europe.

ÂŠ Burson-Marsteller/PatientView

Blood Disorders

European Haemophilia Consortium (EHC) http://www.ehc.eu

Activities and campaigns Geographic areas of operation: Europe. Key activities: Umbrella organisation for national haemophilia associations in Europe. Communicates with policymakers, the medical profession, patients and the public, to facilitate consultation, discussion and dissemination of information on issues related to bleeding disorders. The EHC mission is to improve the quality of life of people with haemophilia and other hereditary bleeding disorders in Europe. Key campaigns: Supports ‘European Principles of Haemophilia Care’, ‘World Haemophilia Day (WHD)’ (every April), and ‘Rare Disease Day’ (every February).

Members and memberships Number of member groups: 36 national associations in 36 European countries. Countries of member groups: Albania, Austria, Belgium, Bosnia, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Macedonia, Malta, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK. Groups to which organisation is affiliated: European Disability Forum (EDF); European Haemophilia Surveillance System (EUHASS); European Organisation for Rare Diseases (EURORDIS); Patients Network for Medical Research and Health (EGAN); partner of World Federation of Hemophilia (WFH). Current affiliations with the EU: Member of the DG SANCO EU Committee of Experts on Rare Disease. Revenue Pharmaceutical funding: 2011: Baxter; Bayer; Biotest; CSL Behring; Inspiration Biopharmaceuticals; Pfizer; Sanquin. Main sources of funding: Pharmaceutical companies; membership fees.

European Patient Group Directory 2011–2012

T: +32-2-521-11-50 F: +32-2-520-68-66 Email: office@ehc.eu

Main contact: Jo Eerens Position of main contact: Chief Executive Officer Name of representative in Brussels: Chief Executive Officer Position of representative in Brussels: Jo Eerens Contact for representative in Brussels: office@ehc.eu

Galerie Agora Rue du Marché aux herbes 105 B 14 1000 Brussels Belgium

Neurological Conditions

European Headache Alliance (EHA) http://www.e-h-a.eu c/o Migraine Association of Ireland Unit 14, Block 5 Port Tunnel Business Park Clonshaugh Dublin 17 Ireland

Email: info@migraine.ie / donnawalsh@migraine.ie Main contact: Audrey Craven Position of main contact: President

European Patient Group Directory 2011–2012

T: +353-1-894-1280 / +353-1-894-1281 F: +353-1-802-2044

Activities and campaigns Geographic areas of operation: Europe. Key activities: Patient umbrella group which represents patient groups from across Europe. Promotes awareness and understanding of migraine and other headache disorders. Voices the views of headache patients across Europe, and informs and influences policy makers about headache disorders. Key campaigns: Organises ‘European Migraine Day of Action (EMDA)’ (every September). EHA ‘Madrid Manifesto on Migraine and Headache Disorders’.

Members and memberships Number of member groups: 18 member associations from 16 European countries. Countries of member groups: Austria, Belgium, Denmark, Finland, Germany, Iceland, Ireland, Italy (2), Luxembourg, Netherlands, Norway, Serbia, Spain, Sweden, Switzerland, UK (2). Groups to which organisation is affiliated: European Federation of Neurological Associations (EFNA). Current affiliations with the EU: Involved in the activities of the European Medicines Agency (EMA). Revenue Most recent yearly revenue: Approximately €125,000 (2010), according to GSK. Pharmaceutical funding: GSK points out that its 2010 grant of €15,000 represented 12% of the organisation’s revenue that year. Main sources of funding: Pharmaceutical companies.

Heart and Circulatory Diseases

European Heart and Lung Transplant Federation (EHLTF) http://www.ehltf.info BP 7 Anderlecht-Erasme 1070 Brussels Belgium

Main contact: Arnulf Pohl Position of main contact: Chairperson

T: +43-676-420-34-66 Email: arnulf.pohl@tmo.at

Members and memberships Number of member groups: 18 national organisations from 18 European countries. Countries of member groups: Austria, Belgium, Croatia, Denmark, Finland, France, Greece, Hungary, Ireland, Italy, Netherlands, Norway, Poland, Slovenia, Spain, Sweden, Switzerland, UK. Groups to which organisation is affiliated: European Patients’ Forum (EPF).

European Patient Group Directory 2011–2012

Activities and campaigns Geographic areas of operation: Europe. Key activities: Provides patient support and information, raises awareness of organ donation, and advocates with European political institutions. Key campaigns: ‘EHLTF Games’, a celebration of life, arranged bi-annually. Objectives for 2012 onwards: “The EHLTF mission is to become the trusted, respected and authoritative voice representing all heart and lung transplant recipients throughout Europe.”

Revenue Pharmaceutical funding: Astellas Pharma; Novartis. Main sources of funding: Pharmaceutical companies; membership fees.

Heart and Circulatory Diseases

European Heart Network (EHN) http://www.ehnheart.org Rue Montoyer 31 1000 Brussels Belgium

European Patient Group Directory 2011–2012

T: +32-2-512-91-74 F: +32-2-503-35-25 Email: info@ehnheart.org

Activities and campaigns Geographic areas of operation: Europe. Key activities: Alliance of heart foundations and other similar NGOs that play a leading role in the prevention and reduction of cardiovascular diseases through advocacy, networking, education, and patient support. Influences European policymakers in favour of a hearthealthy lifestyle, disseminates information, encourages research, and nurtures ties between groups concerned with the prevention of cardiovascular diseases. Key campaigns: Member of the consortium of the ‘Tobacco-Free Europe’ campaign. Objectives for 2012 onwards: “The ‘EuroHeart II’ project in which EHN partners aims to provide outputs that can be used to develop community initiatives to promote cardiovascular health.” Current EU-funded projects: Partner in two projects: ‘EuroHeart II’, 2011-2014, funded by the DG SANCO 2nd EU Public Health Programme 2008-2013; and ‘TobTaxy (Making Tobacco Tax Trendy)’, 2010-2013, funded by the Health Programme 2008-2013 of the Executive Agency for Health and Consumers (EAHC).

Main contact: Susanne Løgstrup Position of main contact: Director Name of representative in Brussels: Susanne Løgstrup Position of representative in Brussels: Director Contact for representative in Brussels: info@ehnheart.org

Members and memberships Number of member groups: 33 member organisations from 26 European countries. Countries of member groups: Austria, Belgium, Bosnia, Cyprus, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy (4), Lithuania, Netherlands (2), Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden (2), Switzerland, Turkey, UK (3). Groups to which organisation is affiliated: European Public Health Alliance (EPHA); World Heart Federation (WHF); World Hypertension League (WHL); partner in the Smoke-Free Partnership (SFP). Current affiliations with the EU: Member of the DG SANCO EU Health Policy Forum (EUHPF). Involved in the activities of the European Medicines Agency (EMA). Revenue Most recent yearly revenue: €632,000 (2010), according to the Register of the European Transparency Initiative (ETI). Pharmaceutical funding: No pharma funding, except as a member of the ‘Tobacco-Free Europe’ campaign, to which Johnson & Johnson, Novartis, and Pfizer supply unrestricted educational grants. Main sources of funding: 2010, according to the Register of the European Transparency Initiative (ETI): core funding from member organisations (€479,000); donations (€124,000); European Commission (€24,000).

Neurological Conditions

European Huntington’s Disease Network (EHDN) http://www.euro-hd.net c/o Department of Neurology Universitätsklinikum Ulm Oberer Eselsberg 45/1 89081 Ulm Germany

Main contact: G. Bernhard Landwehrmeyer Position of main contact: Speaker of the European HD Network

T: +49-731-500-63-101 F: +49-731-500-63-082 Email: info@euro-hd.net

Members and memberships Number of member groups: No member groups; individual members from 21 European countries. Countries of member groups: Austria, Belgium, Czech Republic, Denmark, Finland, France, Germany, Ireland, Italy, Malta, Netherlands, Norway, Poland, Portugal, Romania, Slovenia, Spain, Sweden, Switzerland, Turkey, UK.

European Patient Group Directory 2011–2012

Activities and campaigns Geographic areas of operation: Europe. Key activities: Provides a platform for Huntington’s disease (HD) professionals and patients (and their families) to work together towards a treatment for HD. Currently building a registry of clinical data and biosamples throughout Europe for HD research and development.

Revenue Main sources of funding: High-Q Foundation.

Gender Health

European Institute of Women’s Health (EIWH) http://www.eurohealth.ie 33 Pearse Street Dublin 2 Ireland

Main contact: Peggy Maguire Position of main contact: Director General

European Patient Group Directory 2011–2012

T: +353-1-671-5691 F: +353-1-671-5662 Email: info@eurohealth.ie

Activities and campaigns Geographic areas of operation: Europe. Key activities: Established to ensure that women’s health issues are on the European agenda. Working to make the health and wellbeing of women and the family a priority for the European Commission and all EU Member States. Disseminates the results of European research on women’s health issues, and promotes gender equity in health treatment and care. Key campaigns: Supports ‘European Week Against Cancer’ (every May). Current EU-funded projects: Partner in ‘Engender’, 2009-2011, partly funded by the Executive Agency for Health and Consumers (EAHC).

Members and memberships Number of member groups: No member organisations, but supported by a European Advisory Council (EAC) composed of organisations and individuals from across Europe with diverse expertise in women’s health. Groups to which organisation is affiliated: Health First Europe (HFE). Current affiliations with the EU: Involved in the activities of the European Medicines Agency (EMA). Revenue Most recent yearly revenue: Approximately €142,000 (2010), according to GSK. Pharmaceutical funding: GSK points out that its 2010 grant of €20,000 represented 14% of the organisation’s revenue that year. Main sources of funding: Pharmaceutical companies.

Renal

European Kidney Health Alliance (EKHA) http://www.ekha.eu 9-13 Rue d’Idalie 1050 Brussels Belgium T: +32-2-639-62-30 Email: info@ekha.eu Main contact: Anna Rouillard

Position of main contact: Permanent Brussels Representative Name of representative in Brussels: Anna Rouillard Position of representative in Brussels: Permanent Brussels Representative Contact for representative in Brussels: anna.rouillard@ekha.eu

Activities and campaigns Geographic areas of operation: Europe. Key activities: Alliance of not-for-profit organisations representing key stakeholders in kidney health issues in Europe. Takes a multidisciplinary approach, involving patients and families, doctors, nurses, researchers, and other healthcare professionals. Believes that the issue of kidney health and disease must be considered at European level. Key campaigns: Supports ‘World Kidney Day’ (every March). Objectives for 2012 onwards: “The European Council’s 2010 ‘Innovative approaches for chronic diseases in public health and healthcare systems’ calls on the EU to consult with stakeholders to identify options to prevent chronic diseases. As a contributor to the debate, EKHA is looking forward to the process.”

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: 7 pan-European, international or national bodies (one is a patient group).

Renal

European Kidney Patients’ Federation (CEAPIR) http://www.ceapir.eu c/o the Irish Kidney Association Donor House, Block 43A Parkwest Dublin 12 Ireland

Main contact: Nadine Stohler Position of main contact: President

European Patient Group Directory 2011–2012

T: +353-1-6205-306 F: +353-1-6205-366 Email: info@ceapir.org

Activities and campaigns Geographic areas of operation: Europe. Key activities: European umbrella organisation for national kidney patients’ organisations in Europe, founded by kidney patients as the voice of European kidney patients. Aims to place renal disease onto the EU public-health agenda. Promotes the well-being, treatment, and living conditions of kidney patients. Key campaigns: Takes part in ‘European Day for Organ Donation and Transplantation’ (every October). Members participate in ‘World Kidney Day’ (every March).

Members and memberships Number of member groups: 21 national kidney patients’ associations from 21 European countries. Countries of member groups: Austria, Croatia, Denmark, Estonia, Finland, France, Germany, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Netherlands, Norway, Poland, Portugal, Slovenia, Sweden, Switzerland, UK. Groups to which organisation is affiliated: European Disability Forum (EDF); European Kidney Health Alliance (EKHA); European Patients’ Forum (EPF); European Platform for Patients’ Organisations, Science and Industry (EPPOSI); International Alliance of Patients’ Organisation (IAPO); International Federation of Kidney Foundations (IFKF). Revenue Pharmaceutical funding: Amgen. Main sources of funding: Pharmaceutical companies; membership fees.

Rheumatic and Musculoskeletal Diseases

European League Against Rheumatism (EULAR) http://www.eular.org

Activities and campaigns Geographic areas of operation: Europe. Key activities: Umbrella organisation representing Europe’s rheumatology patients, health professionals and scientific societies. The national organisations of people with arthritis/ rheumatism across Europe work together via the EULAR Standing Committee of People with Arthritis/Rheumatism in Europe (PARE). Key campaigns: Plays a major role in ‘Alliance Against Arthritis Action Day (AAA)’ (every March). Participates in ‘World Arthritis Day (WAD)’ (every October). Objectives for 2012 onwards: “EULAR has eight 2012 objectives, including: strengthened activities in currently less-prioritised areas (such as non-inflammatory and orphan diseases); musculoskeletal diseases to be recognised as a priority major-disease area; and increased international partnerships for EULAR.” Current EU-funded projects: Partner in ‘European Musculoskeletal Conditions Surveillance and Information Network (Eumusc.net)’, 2010-2013, funded by the Executive Agency for Health and Consumers (EAHC).

Members and memberships Number of member groups: 35 patient associations from 34 European countries. Countries of member groups: Austria, Belgium (2), Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Macedonia, Malta, Montenegro, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK. Groups to which organisation is affiliated: International League of Associations for Rheumatology (ILAR). Current affiliations with the EU: Participates in the DG SANCO Task Force of Major and Chronic Diseases (TFMCD). Revenue Pharmaceutical funding: 2011 corporate feepaying members of EULAR: Abbott Laboratories SA; Actelion Pharmaceuticals Ltd; Amgen (Europe) GmbH; AstraZeneca; Bioibérica SA; Bristol-Myers Squibb UPSA; Helsinn Healthcare SA; HGS International S.a.r.l; Hoffmann-La Roche Ltd; IBSA Institut Biochimique SA; Laboratoires Expanscience; Lilly; medac GmbH; Merck & Co., Inc; Mundipharma International Ltd; NegmaLerads; NicOx SA; Novartis Pharma AG; Novo Nordisk A/S; Pfizer Pharmaceutical Group; Pierre Fabre Médicament; Rottapharm Madaus GmbH; Sanofi Aventis Groupe; Servier International; TRB Chemedica International SA; UCB Pharma SA. Main sources of funding: Pharmaceutical companies; medical device companies; scientific societies.

European Patient Group Directory 2011–2012

T: +41-44-716-30-30 F: +41-44-716-30-39 Email: eular@eular.org

Main contact: Heinz Marchesi Position of main contact: Executive Director Name of representative in Brussels: Sören Haar Position of representative in Brussels: Head of EULAR Brussels EU Office Contact for representative in Brussels: soeren.haar@eular.eu

Seestrasse 240 8802 Kilchberg Zürich Switzerland

Disability

European League of Stuttering Associations (ELSA) http://www.stuttering.ws 31 Grosvenor Road Jesmond Newcastle-upon-Tyne NE2 2RL UK

Main contact: Edwin Farr Position of main contact: Chairman

T: +44-191-281-8003 F: +44-191-281-8003 Email: elsa.europe@ymail.com

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: 25 member associations from 22 European countries. Countries of member groups: Austria, Belgium (2), Bulgaria, Croatia, Denmark, Estonia, Finland, France (2), Germany, Iceland, Ireland, Italy, Latvia, Lithuania, Netherlands, Poland, Serbia, Slovenia, Spain (2), Sweden, Switzerland, UK. Groups to which organisation is affiliated: European Disability Forum (EDF); International Stuttering Association (ISA).

Activities and campaigns Geographic areas of operation: Europe. Key activities: Umbrella group for national stuttering associations in Europe. Aims to exchange information and experiences, represent the interests of stutterers with relevant political and professional bodies, and promote self-help. Key campaigns: Supports ‘International Stuttering Awareness Day (ISAD)’ (every October). Objectives for 2012 onwards: “Initial priorities include building a database on stuttering, encouraging an integrated approach to stuttering therapy, and promoting research and the exchange of ideas _ plus capitalising on the the popularity of the film, ‘The King’s Speech’, to raise awareness of stuttering.”

Revenue Most recent yearly revenue: £14,000/ approximately €16,000 (2009-2010), according to the Charity Commission. Main sources of funding: European Commission.

Liver Disease

European Liver Patients Association (ELPA) http://www.elpa-info.org F. De Renesselaan 57 3800 Sint-Truiden Belgium

Main contact: Tatjana Reic Position of main contact: President

T: +49-(0)-2225-18476 [President] Email: contact@elpa-info.org / nadinepiorkowsky@t-online.de

Members and memberships Number of member groups: 19 member organisations from 15 European countries. Countries of member groups: Austria, Belgium (2), Bosnia, Bulgaria, Croatia, Germany (2), Italy, Netherlands, Poland, Portugal, Romania, Slovakia, Spain (2), Sweden, UK (2).

European Patient Group Directory 2011–2012

Activities and campaigns Geographic areas of operation: Europe. Key activities: Association of liver patient groups from European countries. Aims to promote the interests of people with liver disease, monitor hepatitis and other liver disorders, publicise awareness and prevention, and raise the relatively-low profile of liver disease (compared with other areas of medicine, such as heart disease). Key campaigns: ELPA’s ‘Call to Action to Tackle Viral Hepatitis B and C’. Supports ‘World Hepatitis Day’ (every May). Objectives for 2012 onwards: “The 2011 ELPA workshop, ‘Fighting the Shadow—Hepatitis C and Mental Health’, was the first step towards proposed European guidelines for hepatitis C and mental health.”

Revenue Most recent yearly revenue: €318,000 (2009). Pharmaceutical funding: 2009: unrestricted grants from Bristol-Myers Squibb; Gilead; Novartis; Roche; and Tibotec. Main sources of funding: 2009: pharmaceutical companies (€316,000); membership fees (€1,000).

Respiratory

European Lung Foundation (ELF) http://www.european-lung-foundation.org 442 Glossop Road Sheffield S10 2PX UK

Main contact: Pippa Powell Position of main contact: Manager

European Patient Group Directory 2011–2012

T: +44-114-267-2875 Email: info@europeanlung.org

Activities and campaigns Geographic areas of operation: All of Europe (including European countries outside the EU). Key activities: European foundation dedicated to lung diseases. Brings together patients, the public and respiratory professionals to influence respiratory medicine. Works with patient organisations across Europe to involve people with lung diseases at every level of research, and listens to their needs, to ensure that their voice can be heard by health professionals and politicians. Current EU-funded projects: Partner in two projects: ‘Airway Disease Predicting Outcomes through Patient Specific Computational Modelling (AirPROM)’, 2011-2016, funded by the 7th Framework Programme; and ‘Unbiased BIOmarkers in PREDiction of respiratory disease outcomes (U-BIOPRED)’, 20082013, partly funded by the 7th Framework Programme.

Members and memberships Groups to which organisation is affiliated: European Respiratory Society (ERS). Revenue Pharmaceutical funding: None, bar funding by Boehringer Ingelheim of the annual lung-function testing event at the European Respiratory Society Congress. Main sources of funding: European Respiratory Society (ERS); funding of factsheets by the Health and Environment Alliance (HEAL).

Genetic and Rare Diseases

European Marfan Support Network (EMSN) http://www.marfan.eu andhttp://www.marfan.de/emsn Römerweg 4 4410 Liestal Switzerland

Main contact: Béatrice Preston Position of main contact: Chairperson

T: +41-(0)6-921-91-89 Email: preston5@bluewin.ch

European Patient Group Directory 2011–2012

Revenue Main sources of funding: Membership fees.

Activities and campaigns Geographic areas of operation: Europe. Key activities: Coalition of national organisations for people affected by Marfan syndrome (or related disorders). Supports member organisations, and exchanges information about Marfan syndrome and living with this complex genetic disorder. Runs an annual EMSN Young Adults Meeting.

Members and memberships Number of member groups: 14 member organisations from 13 European countries. Countries of member groups: Austria, Belgium (2), Denmark, Finland, France, Germany, Netherlands, Norway, Slovakia, Spain, Sweden, Switzerland, UK. Groups to which organisation is affiliated: International Federation of Marfan Syndrome Organizations (IFMSO).

Neurological

European ME Alliance (EMEA) http://www.euro-me.org Sønder Alle 5, st 3, 9500 Hobro Denmark

Main contact: Richard Simpson Position of main contact: Chairman

T: +44-(0)7759-349-743 Email: info@euro-me.org

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: 11 member groups from 11 European countries. Countries of member groups: Belgium, Denmark, Germany, Ireland, Italy, Netherlands, Norway, Spain, Sweden, Switzerland, UK.

Activities and campaigns Geographic areas of operation: Europe. Key activities: Grouping of European organisations involved in supporting patients with myalgic encephalomyelitis (ME/CFS). Campaigns for biomedical research to provide treatments and cures for ME/CFS. Member groups work together to promote awareness of ME/CFS. Key campaigns: ‘Burst Our Bubble’. Supports ‘International ME Awareness Month’ (every May). Objectives for 2012 onwards: “EMEA will continue to work together on initiatives of benefit to patients in Europe. We look forward to progressive developments in treatments, and hope that our continued lobbying will make the relevant authorities aware that only good science will prevail.”

Gender Health

European Men’s Health Forum (EMHF) http://www.emhf.org

Activities and campaigns Geographic areas of operation: Europe. Key activities: European membership association dedicated to the improvement of men’s health. As a platform for the collaboration of appropriate stakeholder groups in Europe, engages in awareness-raising campaigns, and actively contributes to European public health and social policy debates. Key campaigns: Members play a key role in ‘International Men’s Health Week (IMHW)’ (every June). Current EU-funded projects: Partner in ‘Engender’, 2009-2011, partly funded by the Executive Agency for Health and Consumers (EAHC).

Members and memberships Number of member groups: 24 member organisations from 15 European countries. Countries of member groups: Austria (2), Belgium, Denmark, Finland, France, Germany (3), Hungary (3), Ireland, Netherlands (2), Norway, Portugal, Slovakia, Sweden, Switzerland, UK (4). Groups to which organisation is affiliated: European Federation of Pharmaceutical Industries and Associations (EFPIA); European Patients’ Forum (EPF); European Public Health Alliance (EPHA); GAMIAN Europe; International Society for Men’s Health and Gender (ISMH). Revenue Most recent yearly revenue: Approximately €98,000 (2010-2011). Pharmaceutical funding: Bayer-Schering Pharma; European Federation of Pharmaceutical Industries and Associations (EFPIA); GSK; Novartis; Pfizer; Roche Pharmaceuticals. Main sources of funding: European Commission; pharmaceutical companies; membership fees.

European Patient Group Directory 2011–2012

T: +32-(0)-2-234-30-58 F: +32-(0)-2-230-33-00 Email: office@emhf.org

Main contact: Dr Ian Banks Position of main contact: President Name of representative in Brussels: Dr Ian Banks Position of representative in Brussels: President Contact for representative in Brussels: ian.banks@emhf.org

Rue de l’Industrie 11 1000 Brussels Belgium

Neurological Conditions

European Multiple Sclerosis Platform (EMSP) http://www.ms-in-europe.org Rue Auguste Lambiotte 144/8 1030 Brussels Belgium

100

European Patient Group Directory 2011–2012

T: +32-(0)-2-305-80-12 F: +32-(0)-2-305-80-11 Email: secretariat@emsp.org

Activities and campaigns Geographic areas of operation: Europe. Key activities: Umbrella organisation for multiple sclerosis societies from European countries. Represents the interests of the societies at European level, and works to achieve goals of high-quality, equitable treatment and support for people with MS throughout Europe. Acts as a focal point for liaison with the institutions of the EU and other European organisations. Key campaigns: Supports ‘World MS Day’ (every May). Objectives for 2012 onwards: “With huge disparities in multiple sclerosis care across Europe, EMSP will stress that that European citizens and the public at large need to be accurately informed of the need for more and better therapies for MS.” Current EU-funded projects: Partner in ‘European Register for Multiple Sclerosis (EUReMS)’, 20112014, funded by the Executive Agency for Health and Consumers (EAHC).

Main contact: Christoph Thalheim Position of main contact: Secretary General Name of representative in Brussels: Christoph Thalheim Position of representative in Brussels: Secretary General Contact for representative in Brussels: secretariat@emsp.org

Members and memberships Number of member groups: 31 member societies in 31 European countries. Countries of member groups: Austria, Belgium, Bosnia, Croatia, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Malta, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK. Groups to which organisation is affiliated: European Citizen Action Service (ECAS); European Disability Forum (EDF); European Federation of Neurological Associations (EFNA); European Patients’ Forum (EPF). Current affiliations with the EU: Member of the Patients and Consumers Working Party (PCWP) of the European Medicines Agency (EMA). Revenue Most recent yearly revenue: €776,000 (2009). Pharmaceutical funding: 2009: Almirall; Baxter; Bayer Schering Pharma; Biogen Idec; Genzyme; GSK; GW Pharmaceuticals; Merck Serono; Novartis; UCB. GSK points out that its 2010 donation of €25,000 represented just under 4% of the organisation’s revenue that year. Main sources of funding: 2009: Pharmaceutical companies; medical device and testing companies; European Commission (€60,000).

Addiction

European Mutual-Help Network for AlcoholRelated Problems (EMNA) http://www.emna.org Via di S. Maria in Via Lata 3/3 16128 Genova Italy

Main contact: Ennio Palmesino Position of main contact: Chair of the Board

T: +39-001-382-252 Email: e.palmesino@tiscali.it

101

Activities and campaigns Geographic areas of operation: Europe. Key activities: European network of groups supporting recovery from alcohol-related harm. Advances mutual help, collaborates with professionals, and complements and strengthens the work of other organisations promoting policies for alcohol-related harm reduction. Objectives for 2012 onwards: “EMNA will aim to facilitate the exchange of experience and ideas for the benefit of members. The biggest benefit, it seems, is to learn from each other. EMNA hopes to influence EU policies, and to produce a ‘Self Help in Europe’ manifesto.”

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: 14 member groups from 9 European countries. Countries of member groups: Denmark, France (2), Germany (3), Hungary, Italy, Netherlands, Norway (2), Spain, Sweden (2).

Cancer

European Myeloma Platform (EMP) http://www.emp-myeloma.eu Laarbeeklaan 101 1090 Brussels Belgium

102

European Patient Group Directory 2011–2012

T: +32-(0)2-476-31-06 F: +32-(0)2-477-62-10 Email: emp-office@uzbrussel.be

Activities and campaigns Geographic areas of operation: Europe. Key activities: European umbrella organisation of myeloma patient support groups, run by patients and their relatives. Aims to make treatments and medication more accessible, to provide access to information on clinical trials, to stimulate research, and to collaborate with European myeloma patient organisations. Scheduled to merge with Myeloma Euronet (ME) at about the time of publication of this Directory. Key campaigns: Supports ‘Rare Disease Day’ (every February). Objectives for 2012 onwards: “EMP is moving towards involvement in the development of clinical trials, intensifying co-operation with academic and pharmaceutical industry researchers. EMP intends to escalate dialogue with regulatory bodies, and will continue advocating for access to, and reimbursement of, treatments.”

Main contact: Sonia Goossen Position of main contact: Contact person Name of representative in Brussels: Sonia Goossen Position of representative in Brussels: Contact person at EMP office Contact for representative in Brussels: emp-office@uzbrussel.be

Members and memberships Number of member groups: 12 member organisations from 7 European countries. Countries of member groups: Austria, Belgium (3), Denmark, Germany (3), Netherlands, Portugal (2), Switzerland. Groups to which organisation is affiliated: European Cancer Patient Coalition (ECPC); European Forum for Good Clinical Practice (EFGCP); European Organisation for Rare Diseases (EURORDIS). Current affiliations with the EU: Involved in the following activities of the European Medicines Agency (EMA): Patient Observer in the Pharmacovigilance Working Party (PhVWP); represented in the Patient and Consumer Working Party (PCWP); and represented in the EudraCT/TIG/JOG working group. Revenue Most recent yearly revenue: €42,000 (2010). Pharmaceutical funding: 2010: Amgen (€10,000); Celgene (€17,000); Novartis (€10,000). Main sources of funding: 2010: pharmacetical companies; Contactgroep Myeloom en Waldenström Patiënten (CMWP); Universiteits Ziekenhuis (UZ) Brussels.

Rheumatic and Musculoskeletal Diseases

European Network for Children with Arthritis (ENCA) http://www.enca.org c/o Children’s Chronic Arthritis Association Ground Floor, Amber Gate City Wall Road, Worcester, WR1 2AH UK

Main contact: Caroline Cox Position of main contact: ENCA Secretary

T: +44-(0)-1905-745-595 F: +44-(0)-1905-745-703 Email: secretary@enca.org

Members and memberships Number of member groups: 8 member associations from 8 European countries. Countries of member groups: Belgium, Denmark, France, Germany, Italy, Netherlands, Portugal, UK.

103

Activities and campaigns Geographic areas of operation: Europe. Key activities: Informal network of parent support groups and national juvenile idiopathic arthritis (JIA) associations in Europe. Exchanges information, promotes common projects at European level, and creates informal networks and regular exchanges between associations.

European Patient Group Directory 2011–2012

Revenue Main sources of funding: Membership fees.

Public Health

European Network for Smoking and Tobacco Prevention (ENSP) http://www.ensp.org Chaussee d’Ixelles 144 1050 Brussels Belgium T: +32-2-230-65-15 F: +32-2-230-75-07 Email: info@ensp.org

Main contact: Francis Grogna Position of main contact: Secretary General Name of representative in Brussels: Francis Grogna Position of representative in Brussels: Secretary General Contact for representative in Brussels: francis.grogna@ensp.org

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European Patient Group Directory 2011–2012

Current EU-funded projects: Partner in ‘TobTaxy (Making Tobacco Tax Trendy)’, 2010-2013, funded by the Health Programme 2008-2013 of the Executive Agency for Health and Consumers (EAHC).

Activities and campaigns Geographic areas of operation: Europe. Key activities: Network of member organisations active in the field of tobacco control. Promotes greater coherence in smoking-prevention activities, and encourages the adoption of tobacco-control policies at national and European levels. Facilitates the activities of national coalitions and specialised smokingprevention networks. Key campaigns: ‘Declaration: Total Ban With No Exceptions’, a call to prioritise tobacco control. Member of the consortium of the ‘Tobacco-Free Europe’ campaign. Major contributor to ‘World No Tobacco Day’ (every May). Objectives for 2012 onwards: “We call on European countries to prioritise tobacco control, and to implement the WHO Framework Convention on Tobacco Control (FCTC) throughout Europe by 2020. We continue to work towards our goal of achieving a fully smoke-free Europe by 2040.”

Members and memberships Number of member groups: Over 500 members in 29 national member coalitions (not all patient groups; some are government bodies) from 29 European countries. Countries of member groups: Austria, Belgium, Bulgaria, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Netherlands, Norway, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK. Groups to which organisation is affiliated: European Public Health Alliance (EPHA). Current affiliations with the EU: Member of the DG SANCO EU Health Policy Forum (EUHPF). Revenue Most recent yearly revenue: €344,000 (2009). Main sources of funding: 2009: European Commission (€173,000); membership fees (€123,000).

Mental Health

European Network of (Ex-) Users and Survivors of Psychiatry (ENUSP) http://www.enusp.org

Activities and campaigns Geographic areas of operation: Europe. Key activities: Grassroots umbrella federation that aims to unify national organisations of (ex)users and survivors of psychiatry across Europe. Provides direct representation of people who have received psychiatric services, exchanges opinions, views and experiences, and attempts to influence policy at European level. Objectives for 2012 onwards: “ENUSP plans to continue ‘Advocacy Update’, providing a Europe_wide platform to mental healthservice users and psychiatric survivors. We also want to ensure ENUSP representation at decision- and policy_making forums, and to establish ENUSP’s involvement in research and other projects.”

Members and memberships Number of member groups: 73 member organisations in 28 European countries. Countries of member groups: Austria (3), Belgium (3), Bosnia, Bulgaria, Czech Republic (2), Denmark (2), Estonia (2), Finland (2), France (2), Germany (3), Greece (7), Hungary (2), Iceland, Ireland (3), Italy (4), Latvia, Lithuania (3), Netherlands (2), Norway (4), Poland, Portugal (3), Romania (2), Slovakia, Slovenia (7), Spain, Sweden (2), Switzerland (2), UK (8). Groups to which organisation is affiliated: European Disability Forum (EDF); European Patients’ Forum (EPF); International Disability Caucus (IDC); World Network of Users and Survivors of Psychiatry (WNUSP). Revenue Most recent yearly revenue: €15,000 (2009). Pharmaceutical funding: None. Main sources of funding: 2010: Membership fees (under €1,000); European Commission (€6,000); donations (€6,000).

European Patient Group Directory 2011–2012

T: +49-30-8596-3706 F: +49-30-4039-8752 Email: desk@enusp.org

Main contact: Gabreilla Tanasan Position of main contact: Chair Name of representative in Brussels: Rafaël Daem Position of representative in Brussels: Deputy Chair Contact for representative in Brussels: rafael@uilenspiegel.net

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Zabel-Krueger-Damm 183 / Uilenspiegel 13469 Berlin / Brussels Germany

Neurological Conditions

European Network of Fibromyalgia Associations (ENFA) http://www.enfa-europe.eu Postbus2 Centraal Station Keizerinlaan 3 1000 Brussels Belgium

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European Patient Group Directory 2011–2012

T: +31-63-40-82-137 Email: contact@enfa-europe.eu

Activities and campaigns Geographic areas of operation: Europe. Key activities: Network of patient associations and support groups functioning in close consultation with national associations. Aims to ensure greater awareness of fibromyalgia among Europe’s politicians, health professionals, scientists, and general public. Key campaigns: Supports ‘European Week Against Pain (EWAP)’ (every October). Objectives for 2012 onwards: “We are working towards establishing a Pain Alliance Europe (PAE).”

Main contact: Robert Boelhouwer Position of main contact: President Name of representative in Brussels: Marisol Morales Position of representative in Brussels: Member, Political Affairs Contact for representative in Brussels: contact@enfa-europe.eu

Members and memberships Number of member groups: 13 member associations from 11 European countries. Countries of member groups: Belgium (2), Denmark, France, Germany, Italy, Netherlands, Portugal, Slovenia, Spain, Sweden (2), UK. Groups to which organisation is affiliated: None. Current affiliations with the EU: Participates in the European Medicines Agency (EMA) Patient and Consumer Working Party (PCWP), and in the EMA HealthCare Professionals Working Group (HCPWG). Revenue Most recent yearly revenue: €27,000 (2009). Pharmaceutical funding: 2009: Pfizer (€25,000). 2010: UCB (€1,000). Main sources of funding: 2009: pharmaceutical companies; membership fees (€2,000).

Disability

European Network on Independent Living (ENIL) http://www.enil.eu Gran Vía Marqués del Turia, 49-7º,12ª 46005 Valencia Spain

Main contact: Jamie Bolling Position of main contact: Director

T: +34-96-325-54-57 F: +34-96-325-54-59 Email: secretariat@enil.eu

Members and memberships Number of member groups: 36 member organisations in 20 European countries. Countries of member groups: Albania, Austria, Belgium, Bulgaria (2), Cyprus, Finland, France (2), Germany (4), Greece (2), Ireland, Italy (4), Latvia, Montenegro, Norway (2), Slovenia, Serbia, Spain, Sweden (3), Switzerland, UK (5). Groups to which organisation is affiliated: European Disability Forum (EDF).

European Patient Group Directory 2011–2012

Revenue Pharmaceutical funding: None. Main sources of funding: European Commission; Social Welfare Government of Valencia.

107

Activities and campaigns Geographic areas of operation: Europe. Key activities: Cross-disability organisation and network spreading the concept of independent living in EU Member States and neighbouring European countries, and advocating for the implementation of the ‘UN Convention on the Rights of Persons with Disabilities (CRPD)’. Promotes community services, and increases the sharing of information, experiences and insights among people with a disability. Key campaigns: Runs the ‘Strasbourg Freedom Drive’ (every second September). Supports the European Disability Forum’s ‘Freedom of Movement’. Supports the European Commission’s ‘Your Passenger Rights at Hand’. Supports ‘World Autism Awareness Day’ (every April).

Neurological Conditions

European Neuro Muscular Centre (ENMC) http://www.enmc.org Lt. Gen. Van Heutzslaan 6 3743 JN Baarn Netherlands

Main contact: Annette Boersen Position of main contact: Research Manager

T: +31-(0)35-54-80-481 F: +31-(0)35-54-80-499 Email: enmc@enmc.org

108

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: 9 member patient organisations from 8 European countries. Countries of member groups: Denmark, France, Germany, Italy, Netherlands (2), Slovenia, Switzerland, UK.

Activities and campaigns Geographic areas of operation: Europe. Key activities: International research support organisation for neuromuscular disorders. Aims to facilitate communication between scientists and clinicians working in the field of neuromuscular diseases. Runs a clinical trial network, forums, and holds about eight workshops a year. Has patient organisations as members and partner organisations. Objectives for 2012 onwards: “The neuromuscular community is dynamic. Major achievements are being made or expected for the near future. We are increasing the patient platform and patient communication activities through a webforum, newsletters, and meetings.”

Revenue Most recent yearly revenue: €219,000 (2011). Pharmaceutical funding: 2010: Genzyme Europe B.V; GSK (€5,000). Main sources of funding: 2011: member organisations (€180,000); foundations (including the Dutch ALS Foundation, the Dutch FSHD Foundation, and the Jain Foundation); pharmaceutical companies.

Gastrointestinal

European Ostomy Association (EOA) http://www.ostomyeurope.org c/o Deutsche ILCO e.V. Thomas Mann Straße 40 53111 Bonn Germany

Main contact: Ria Smeijers Position of main contact: President

T: +49-(0)-228-338-894-50 F: +49-(0)-228-338-894-75 Email: president@ostomyeurope.org

Members and memberships Number of member groups: 31 member organisations in 29 European countries (plus others in non-European countries). Countries of member groups: Austria, Belgium, Bosnia, Bulgaria, Croatia, Czech Republic, Denmark, Estonia, Finland, France, Germany, Hungary, Iceland, Italy (2), Latvia, Lithuania, Luxembourg, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK (2). Groups to which organisation is affiliated: International Ostomy Association (IOA).

European Patient Group Directory 2011–2012

Revenue Main sources of funding: Membership fees.

109

Activities and campaigns Geographic areas of operation: Mainly Europe. Key activities: Association of associations for ostomates from all over Europe. Run by ostomates, and represents their viewpoints at European level. Helps national ostomy associations get the EOA ‘Charter of Ostomates’ Rights’ implemented and accepted by the authorities in European countries. Key campaigns: Supports ‘World Ostomy Day (WOD)’ (every September). Objectives for 2012 onwards: “Ostomates can make a difference. By co-operating on a national and international level, not restricted by any boundaries, we can use our influence (more than we imagine) to increase the care for ostomates.”

Neurological Conditions

European Parkinson’s Disease Association (EPDA) http://www.epda.eu.com 1 Northumberland Avenue Trafalgar Square London WC2N 5BW UK

Main contact: Lizzie Graham Position of main contact: Secretary General

110

European Patient Group Directory 2011–2012

T: +44-(0)207-872-5510 F: +44-(0)207-872-5611 Email: info@epda.eu.com

Activities and campaigns Geographic areas of operation: Europe. Key activities: European umbrella organisation for Parkinson’s disease. Seeks to raise awareness of, and reduce inequalities in, the treatment and management of Parkinson’s disease across Europe. Aims to help people with Parkinson’s live a full life, and supports the search for a cure. Key campaigns: ‘Life with Parkinson’s’ (parts 1 and 2). ‘Move for Change’, a three-year panEuropean survey. Objectives for 2012 onwards: “By working with member organisations, the EPDA aims to ensure equal access to good-quality Parkinson’s care across Europe. The EPDA will promote a constructive dialogue between science and society (improving education and awareness), and encourage national Parkinson’s organisations in Europe.” Current EU-funded projects: Partner in ‘Restorative Plasticity at Corticostriatal Excitatory Synapses (REPLACES)’, 2008-2012, funded by the 7th Framework Programme.

Members and memberships Number of member groups: 40 patient associations in 31 European countries. Countries of member groups: Austria, Belgium (2), Bulgaria, Croatia, Cyprus, Czech Republic, Denmark (2), Estonia, Finland, France (2), Germany, Greece (2), Hungary, Iceland, Ireland, Italy (2), Lithuania, Luxembourg, Malta, Netherlands, Norway, Poland (4), Portugal, Romania, Serbia, Slovenia, Spain, Sweden (2), Switzerland, Turkey, UK. Groups to which organisation is affiliated: Association of Physiotherapists in Parkinson’s Disease Europe (APPDE); European Disability Forum (EDF); European Federation of Neurological Associations (EFNA). Current affiliations with the EU: Involved in the activities of the European Medicines Agency (EMA). Revenue Most recent yearly revenue: €625,000 (2010). Pharmaceutical funding: 2010: Abbott; GSK; Lundbeck; Merck Serono; Norgine; Orion Pharma; TEVA; UCB. GSK points out that its 2010 donation of €30,000 represented 4.8% of the organisation’s revenue that year. Main sources of funding: Pharmaceutical companies; grants; membership fees (approximately €21,000 per annum).

General Healthcare

European Patients Empowerment for Customised Solutions (EPECS) http://www.epecs.eu Calavariestraat 12B 6211 NJ Maastricht Netherlands

Main contact: Brigitte van der Zanden Position of main contact: Manager

T: +31-(0)6-36-062-039 Email: info@epecs.eu

111

Activities and campaigns Geographic areas of operation: Europe. Key activities: Collaboration of regional patient organisations that aims to give its members (and all European patients) a voice in Europe’s increasingly cross-border healthcare processes. Hopes to participate in the realisation of better conditions for cross-border and Europeanlevel care. Campaigns for the free movement of patients in the EU.

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: 11 organisations (some patient groups) from 3 European countries. Countries of member groups: Belgium, Germany (6), Netherlands (4).

General Healthcare

European Patients’ Forum (EPF) http://www.eu-patient.eu Rue Belliard 65 1040 Brussels Belgium

112

European Patient Group Directory 2011–2012

T: +32-2-280-23-34 F: +32-2-231-14-47 Email: info@eu-patient.eu

Activities and campaigns Geographic areas of operation: Europe. Key activities: Umbrella organisation that brings together chronic-disease-specific patient organisations operating at EU level, and national coalitions of patients organisations. Acts as a collective patients’ voice at EU level. Exchanges good practice and challenges bad practices in the following areas: patients’ rights; equitable access to treatment and care; and health-related quality of life. Key campaigns: Runs the EPF Manifesto Campaign ‘150 Million Reasons to Act.’ Supports the European Commission Information Society’s ‘Telehealth’ Campaign. Objectives for 2012 onwards: “We will continue advocacy in key areas, supported by projects and partnerships. We will launch a capacitybuilding programme, a Youth Strategy, and will campaign for patient involvement in the 2014-2020 EU Programming (particularly the Public Health Programme, Horizon 2020, and Structural Funds and Cohesion Policy).” Current EU-funded projects: Lead partner in ‘Chain of Trust’, 2011-2012, funded by the Health Programme 2008-2013 of the Executive Agency for Health and Consumers (EAHC). On the Advisory Board of ‘Renewing Health (REgioNs of Europe WorkINg toGether for Health)’, 20102012, funded by the Information Communication Technologies Policy Support Programme (ICTPSP), under the Competitiveness and Innovation Framework Programme (CIP). Partner in ‘Interquality’, 2010-2012, funded by the 7th Framework Programme.

Main contact: Nicola Bedlington Position of main contact: Executive Director Name of representative in Brussels: Kaisa Immonen-Charalambous Position of representative in Brussels: Policy Officer Contact for representative in Brussels: kaisa.immonen.charalambous@eu-patient.eu

Members and memberships Number of member groups: 51 member organisations from EU Member States. EPF members are pan-European disease-specific patients’ organisations and national coalitions of patients’ organisations. Countries of member groups: National organisations from: Bulgaria (2), Cyprus, Estonia, France, Hungary, Ireland, Italy, Latvia, Lithuania, Malta, Netherlands, Poland, Romania, Slovakia, Spain, UK. Current affiliations with the EU: Plays an active role in the DG SANCO Patient Safety and Quality of Care Working Group, and the DG SANCO EU Health Policy Forum (EUHPF). Member of the EUnetHTA Joint Action (JA) Stakeholder Forum. Sits on the DG Research and Innovation HighLevel Advisory Group on Research. Sits on the Steering Group of the DG Enterprise and Industry Corporate Social Responsibility (CSR) initiative. Participates in the European Medicines Agency (EMA) Board, in its Working Group on Ethical Issues in Third Country Clinical Trials, and in its Patients’ and Consumers’ Working Party (PCWP). Revenue Most recent yearly revenue: €676,000 (2010). Pharmaceutical funding: 2010: Amgen (€35,000); AstraZeneca (€75,000); Baxter (€15,000); CSL Behring (€10,000); Eli Lilly (€25,000); GSK (€70,000); Hoffmann-La Roche (€20,000); Johnson & Johnson (€20,000); MSD (€30,000); Novartis (€80,000); Pasteur Sanofi (€10,000); Pfizer (€80,000). Main sources of funding: 2010: pharmaceutical companies (€470,000); European Commission (€65,000); medical device companies and foundations (€56,000); membership fees (€8,000).

Scientific Research

European Platform for Patients’ Organisations, Science and Industry (EPPOSI) http://www.epposi.org

Activities and campaigns Geographic areas of operation: Europe. Key activities: Independent, not-for-profit, partnership-led, multi-stakeholder think tank. Works in European health policy-making, providing members and the public with independent research, capacity-building, and knowledge exchange, with the aim of bridging the gap between innovation and improved public health outcomes. Advanced Innovation Programmes in Chronic Conditions Management. Objective is to build a workable, non-disease specific model for the management of Chronic Conditions Health Technology Assessment: Objective is to examine the question of “How can HTA agencies at national level consider societal benefits as an integral element of the HTA core model which positively contribute not only to the realisation of better health outcomes for EU citizens but also to a smart, sustainable economy?” Innovation in healthcare: Objective is to examine the question of “How can innovation in healthcare be optimised in such a way as to facilitate European citizens to become an integral part of the process toward creating solutions which provide new and incrementally improved products, services and processes, in order to

increase patient survival, societal participation and quality of life?” Members and memberships Number of member groups: Equally weighted membership of over 50 organisations consisting of European umbrella patient organisation members, commercial enterprises and their related trade associations, academic science organisations Countries of member groups: Pan-European Groups to which organisation is affiliated: None Official on-going affiliations with the EU: Expert on Care & Cure towards DG SANCO and DG INFSO’s European Innovation Partnership (EIP) on Active and Healthy Ageing. Revenue Top sources of funding: Unrestricted funding from commercial enterprises and Innovative Medicines Initiative

European Patient Group Directory 2011–2012

T: +32-(0)2-503-13-07 F: +32-(0)2-274-17-59 Email: info@epposi.org

Main contact: Jacqueline Bowman-Busato Position of main contact: Executive Director Name of representative in Brussels: Jacqueline Bowman-Busato Position of representative in Brussels: Executive Director Contact for representative in Brussels: jacqueline.bowman@epposi.org

113

4th floor 21 rue Marie-Thérèse 1000 Brussels, Belgium

Infectious

European Polio Union (EPU) http://www.europeanpolio.eu Walvisstraat 32 2018 Antwerpen Belgium

Main contact: Johan Bijttebier Position of main contact: Chairman

T: +32-3-288-7794 Email: johan.bijttebier@telenet.be

114

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: 18 member organisations from 13 European countries. Countries of member groups: Belgium (3), Denmark, Finland, France, Germany (3), Ireland, Italy, Netherlands, Norway, Spain (2), Sweden, Switzerland, UK. Groups to which organisation is affiliated: European Federation of Neurological Associations (EFNA); European Organisation for Rare Diseases (EURORDIS); Fédération des Associations Européennes et Internationales établies en Belgique (FAIB). Activities and campaigns Geographic areas of operation: Europe. Key activities: European umbrella organisation for national organisations that support people who have had polio, or who are coping with post-polio syndrome (PPS). Collects data on people with polio and PPS, encourages coordinated research into ways to improve their lives and treatment, and is producing a validated information bank of positive help for these people. Key campaigns: Supports ‘World Polio Day’ (every October). Objectives for 2012 onwards: “EPU aims to achieve awareness on post-polio issues in the health sector and social services, and to give medical and social professionals a possibility to exchange new research results. We will debate relevant topics on a professional level.”

Revenue Main sources of funding: Membership fees.

Public Health

European Public Health Alliance (EPHA) http://www.epha.org

Activities and campaigns Geographic areas of operation: Europe. Key activities: Member organisation of public health NGOs, patient groups, health professionals, and disease groups working to improve health and to strengthen the voice of public health in Europe. Aims to bring together the public health community to provide thought leadership and facilitate change, to build public health capacity, to deliver equitable solutions to European public health challenges, and to improve health and reduce health inequalities. Key campaigns: EPHA ‘Health Equity Campaign’ (‘European Charter for Health Equity’). Objectives for 2012 onwards: “During 2011-2015, EPHA aims to see improvements in health and healthy life years for the overall population, strengthened European health systems, and support for institutional and policy frameworks that promote health.” Current EU-funded projects: Partner in two projects: ‘Engender’, 2009-2011, partly funded by the Executive Agency for Health and Consumers (EAHC); and ‘TobTaxy (Making Tobacco Tax Trendy)’, 2010-2013, funded by the Health Programme 2008-2013 of the Executive Agency for Health and Consumers (EAHC). Members and memberships Number of member groups: 76 member associations from 25 European countries. Countries of member groups: Albania, Austria,

Belgium (23), Bulgaria (3), Croatia (5), Cyprus (2), Finland, France (6), Germany (2), Ireland (2), Italy (2), Lithuania, Macedonia, Malta, Netherlands (3), Norway, Poland, Portugal, Romania, Serbia, Slovenia, Spain (3), Switzerland, Turkey, UK (11). Groups to which organisation is affiliated: Civil Society Contact Group; Health and Environment Alliance (HEAL); Platform of European Social NGOs (Social Platform); ALTER-EU signatory. Current affiliations with the EU: Member of the European Food Safety Authority (EFSA) Stakeholder Consultative Platform. Member of the European Medicines Agency (EMA) Patients’ and Consumers’ Working Party (PCWP). Attends the DG SANCO EU Platform for Action on Diet, Physical Activity and Health. Member of the following DG SANCO bodies: EU Health Policy Forum (EUHPF); European Alcohol and Health Forum; and the Stakeholder Dialogue Group. Member of the DG Enterprise and Industry High-Level Group on the Competitiveness of the Agro-Food Industry. Revenue Most recent yearly revenue: €1.11m (2010), according to the Register of the European Transparency Initiative (ETI). Main sources of funding: 2010: DG SANCO (€681,000); Global Health Network (€175,000); membership fees (€69,000); AGRI (€47,000). 2011: Executive Agency for Health and Consumers (EAHC) (€549,000).

European Patient Group Directory 2011–2012

T: +-32-2-230-30-56 F: +-32-2-233-38-80 Email: epha@epha.org Main contact: Monika Kosinska

Position of main contact: Secretary General Name of representative in Brussels: Monika Kosinska Position of representative in Brussels: Secretary General Contact for representative in Brussels: secretarygeneral@epha.org

115

Rue de Trèves 49-51 1040 Brussels Belgium

Reproductive and Sexual Health

European Sexual Health Alliance (ESHA) http://www.essm.org/society/esha.html Avenida de Menendez Pelayo 75 Bajo derecha 3 28007 Madrid Spain

Main contact: Irem Hattat Position of main contact: President

T: +34-91-501-9513 F: +34-91-501-9668 Email: info-esha@salud-sexual.org

Members and memberships Number of member groups: 13 patient support groups in various European countries. Groups to which organisation is affiliated: European Society for Sexual Medicine (ESSM).

116

European Patient Group Directory 2011–2012

Revenue Pharmaceutical funding: 2010: Janssen-Cilag EMEA.

Activities and campaigns Geographic areas of operation: Mainly Europe. Key activities: Umbrella organisation for patient support groups and helplines from across Europe that specialise in sexual health. Develops tools and guidelines for the establishment of a common action plan throughout Europe, communicates sufferers’ needs and expectations in scientific and public arenas, and lobbies for the benefit of sufferers. Key campaigns: Runs ‘European Sexual Awareness Event’ (ESAE) (every February). Supports the DG SANCO ‘Fight Against Fake Medicines’ campaign. Objectives for 2012 onwards: “ESHA will focus on raising public awareness of the issues surrounding counterfeit medicines, and will campaign for the exclusion of counterfeit and substandard medicines from the supply chain.”

Mental Health

European Society for Mental Health and Deafness (ESMHD) http://www.esmhd.org ESMHD office C/Miguel Hernández, 11 28150 Valdetorres de Jarama Madrid Spain

Main contact: Renata Sarmento Position of main contact: Manager

T: +34-647-573-679 Email: manager@esmhd.org

Members and memberships Number of member groups: 40 member groups from 15 European countries.

117

Activities and campaigns Geographic areas of operation: Europe. Key activities: NGO that promotes the positive mental health of deaf people in Europe. Facilitates networking and the exchange of personnel and expertise between countries (especially with its online discussion board). Convenes an international congress every three years, and a special interest group (SIG) meeting every year. Objectives for 2012 onwards: “While those working with deaf people are becoming more aware of their special mental health needs, this vital aspect is still all too often misunderstood or neglected.”

European Patient Group Directory 2011–2012

Revenue Main sources of funding: Congresses; membership fees.

Genetic and Rare Diseases

European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (E.S.PKU) http://www.espku.org Wilhelm-Mellies-Straße 10 32120 Hiddenhausen Germany T: +49-52-21-122-066 F: +49-52-21-699-014 Email: info@espku.org / secretary@espku.org

Main contact: Tobias Hagedorn Position of main contact: Secretary Name of representative in Brussels: Mrs. Natalija Stosicki Position of representative in Brussels: Coordination with European Commission Contact for representative in Brussels: info@espku.org

118

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: 28 member patient associations from 27 European countries. Countries of member groups: Austria, Belgium, Croatia, Czech Republic, Denmark, Estonia, Germany, Greece, Hungary, Iceland, Ireland, Italy (2), Latvia, Lithuania, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK. Activities and campaigns Geographic areas of operation: Europe. Key activities: Umbrella organisation of representatives of people with PKU who have come together to improve the quality of life of people with PKU. Promotes the educational and social welfare of the European PKU community, and stimulates scientific and medical research in PKU. Disseminates information, organises meetings, and helps in the establishment of national PKU societies.

Revenue Pharmaceutical funding: 2011: Merck Serono. Main sources of funding: Advertisements by specialist dietary products companies (Nutricia; Vitaflo); membership fees; sponsorship.

Disability

European Spinal Cord Injury Federation (ESCIF) http://www.escif.org c/o Swiss Paraplegic Association Kantonsstraße 40 6207 Nottwil Switzerland

Main contact: Jane Horsewell Position of main contact: President

T: +41-(0)41-939-54-03 F: +41-(0)41-939-54-39 Email: secretary@escif.org

Revenue Main sources of funding: Congress income; membership fees.

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: 25 member organisations from 22 European countries. Countries of member groups: Albania, Austria, Belgium, Bosnia, Croatia, Czech Republic, Denmark, Finland, France, Germany, Ireland, Italy, Lithuania, Netherlands, Portugal, Romania, Slovenia, Spain, Sweden, Switzerland, Turkey, UK.

119

Activities and campaigns Geographic areas of operation: Europe. Key activities: Pan-European network of organisations representing people living with a spinal-cord injury. Facilitates the exchange of information, experience and knowledge, and works to ensure that information is available to all people with a spinal-cord injury. Establishes and promotes best practice, and functions as a unified voice in Europe, informing, representing and lobbying on behalf of members.

Disability

European Union of the Deaf (EUD) http://www.eud.eu Microbusiness Center 15 Rue de la Loi-Wetstraat 26 1040 Brussels Belgium

120

European Patient Group Directory 2011–2012

F: +32-2-280-34-39 Email: mark.wheatley@eud.eu Main contact: Mark Wheatley

Activities and campaigns Geographic areas of operation: Europe. Key activities: Represents the interests of deaf people at EU level. Aims to promote, advance, and protect the rights of, and opportunities for, deaf people in the EU. Works to establish EU-level dialogues, making sure that deaf issues are raised in consultation with national deaf associations’ members. Key campaigns: Supports the 2010 ‘Brussels Declaration on Sign Languages in the European Union’. Objectives for 2012 onwards: “EUD goals are: recognition of the right to use an indigenous sign language; empowerment through communication and information; and equality in education and employment. We recognise that much work remains to be done before these core EUD themes are adequately achieved.” Current EU-funded projects: Partner in ‘SignSpeak’, 2009-2012, funded by the 7th Framework Programme.

Position of main contact: Executive Director Name of representative in Brussels: Mark Wheatley Position of representative in Brussels: Executive Director Contact for representative in Brussels: mark.wheatley@eud.eu

Members and memberships Number of member groups: 33 member groups in 32 European countries. Countries of member groups: Austria, Belgium (2), Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Malta, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK. Groups to which organisation is affiliated: European Disability Forum (EDF). Revenue Most recent yearly revenue: €270,000 (2011), according to the Register of the European Transparency Initiative (ETI). Pharmaceutical funding: None. Main sources of funding: 2011, according to the Register of the European Transparency Initiative (ETI): European Commission (€216,000); membership fees (€54,000).

Rare

European Waldenström Macroglobulinemia Network (EWMnetwork) http://www.ewmnetwork.eu /http://www.waldenstrom.eu Iepenlaan 10 5248 AK Rosmalen Netherlands

Main contact: Marlies Oom Position of main contact: Secretary

Members and memberships Number of member groups: No member groups, but affiliate groups from 11 European countries. Countries of member groups: Belgium, Denmark, Finland, France, Germany, Greece, Ireland, Netherlands, Sweden, Switzerland, UK. Groups to which organisation is affiliated: European Cancer Patient Coalition (ECPC); European Organisation for Rare Diseases (EURORDIS); Lymphoma Coalition (LC). Revenue Main sources of funding: 2011: Contact Myeloma and Waldenström Patients (CMWP) [Netherlands Organisation for Multiple Myeloma and Waldenström].

121

Activities and campaigns Geographic areas of operation: Europe. Key activities: Umbrella organisation of Waldenström macroglobulinemia (WM) patient support groups in Europe. Aims to represent the interests of WM patients at a European level, and to give WM patients a voice in policy and in the political issues of the European healthcare system. Focuses on inequality of available medication and treatment in the EU, support for more rare cancer research, and the development of national rare cancer plans. Objectives for 2012 onwards: “The Network intends to recruit additional board members, enlarge the number of WM patient support groups in Europe, consolidate current networking and information activities, and look for funding possibilities.”

European Patient Group Directory 2011–2012

T: +31-(0)73-52-17-643 Email: moom@planet.nl

Reproductive and sexual health / Young people

European Youth Network on Sexual and Reproductive Rights (YouAct) http://www.youact.org Currently headquartered in the UK

Main contact: Marie-Claire Price Position of main contact: Coordinator

T: +44-7986-172-626 Email: info@youact.org / mariclaire@youact.org

Members and memberships Number of member groups: 18 advocates or representatives from 11 European countries. Countries of member groups: Belgium, Bulgaria (2), Cyprus (2), Denmark, Ireland (2), Norway, Poland, Portugal, Sweden (3), Turkey, UK (3).

122

European Patient Group Directory 2011–2012

Revenue Pharmaceutical funding: None. Main sources of funding: Companies; NGOs; foundations. Activities and campaigns Geographic areas of operation: Europe (and worldwide). Key activities: European youth network working on behalf of the sexual and reproductive rights of young people. Uses advocacy, training, and awareness raising to ensure that young people have the right to healthcare, the right to choose their own partner, have access to condoms, and are able to choose how many children they want. Key campaigns: Partner in the ‘Commit: Put Youth at the Heart of Development’ campaign. Supports ‘World AIDS Day’ (every December). Objectives for 2012 onwards: “After an incredible period of growth and possibility, YouAct will build upon the ‘UN International Year of Youth (IYY)’ with advocacy efforts that seek to ensure attainment of young people’s sexual and reproductive rights.”

Mental Health

Euro-Psy-Rehabilitation (Europsy) http://www.europsy.be c/o AIGS 84 Rue Saint-Lambert 4040 Herstal Belgium

Main contact: Marc Garcet Position of main contact: General Secretary

T: +32-4-228-89-81 F: +32-4-227-73-65 Email: europsy@europsy.be

Members and memberships Number of member groups: Member groups and individuals in 11 European countries. Countries of member groups: Austria, Belgium, France, Germany, Greece, Netherlands, Poland, Portugal, Slovenia, Spain, UK. Groups to which organisation is affiliated: European Disability Forum (EDF). Mental Health Europe (MHE).

ÂŠ Burson-Marsteller/PatientView

European Patient Group Directory 2011â&#x20AC;&#x201C;2012

123

Activities and campaigns Geographic areas of operation: Europe. Key activities: Develops inter-institutional European exchange in the field of social, professional, and economic rehabilitation of people with a mental health difficulty. Uses forums, seminars and study visits to promote the meeting of institutions and professionals in the field of rehabilitation with users of services.

Revenue Main sources of funding: European Commission; membership fees.

Genetic and Rare Diseases

EURORDIS (European Organisation for Rare Diseases) http://www.eurordis.org c/o Plateforme Maladies Rares 96 rue Didot 75014 Paris France

124

European Patient Group Directory 2011–2012

T: +33-1-56-53-52-10 F: +33-1-56-53-52-15 Email: francois.houyez@eurordis.org

Activities and campaigns Geographic areas of operation: Europe. Key activities: Represents rare disease organisations in European countries. Covers 4,000-plus distinct rare diseases, and acts as the voice of 30 million people affected by rare diseases throughout Europe. Aims to build a pan-European community of patient organisations and people living with rare diseases, and to fight against the impact of rare diseases on people’s lives. Current EU-funded projects: Lead partner in ‘Patients’ Consensus on Preferred Policy Scenarii for Rare Disease’ (POLKA), 2008-2011, partly funded by the DG SANCO 2nd EU Health Programme 2008-2013.

Main contact: Yann le Cam Position of main contact: Chief Executive Officer Name of representative in Brussels: Flaminia Macchia (Mrs) Position of representative in Brussels: Director of European Public Affairs Contact for representative in Brussels: flaminia.macchia@eurordis.org

Members and memberships Number of member groups: 469 member organisations (pan-European and national patient associations) from 41 countries. Countries of member groups: Austria, Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Luxembourg, Malta, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK. Groups to which organisation is affiliated: European Patients’ Forum (EPF); International Association of Patient Organisations (IAPO). Current affiliations with the EU: Member of the DG SANCO EU Committee of Experts on Rare Diseases. Member of the DG SANCO EU Health Policy Forum (EUHPF). Member of the European Medicines Agency (EMA) Scientific Committees. Member of the EUnetHTA Joint Action (JA) Stakeholder Forum. Revenue Most recent yearly revenue: €2.89m (2009). Pharmaceutical funding: 2009: Sigma Tau (€75,000); Novartis (€74,000); CSL Behring (€65,000); Celgene (€35,000); Shire (€23,000). Main sources of funding: 2009: Association Française contre les Myopathies (AFM) Téléthon (28% of revenue); European Commission (27% of revenue); pharmaceutical companies (17% of revenue).

Disability

EuroTinnitus Association (EuroTA) http://www.eurotinnitus.com 9 Rue des Jardins 4591 Differdange Luxembourg

Main contact: Jeannot Pesché Position of main contact: President

T: +352-2040-1410 F: +352-2040-2303 Email: contact@eurotinnitus.com

Members and memberships Number of member groups: 5 members in 3 European countries. Countries of member groups: Belgium, France, Luxembourg.

125

Activities and campaigns Geographic areas of operation: Europe. Key activities: Patient organisation that promotes research in Europe into all inner-ear diseases, with the aim of reducing the suffering of patients with tinnitus, morbus Ménières, and other hearing problems. Provides information, and runs an online forum. Founders are mostly tinnitus patients, and work for EuroTA as unpaid volunteers. Key campaigns: ‘Mails to the World Health Organization’.

European Patient Group Directory 2011–2012

Revenue Main sources of funding: Membership fees.

Genetic and Rare Diseases

Fabry International Network (FIN) http://www.fabryintnetwork.com Alice Nahonlaan 7 9120 Melsele Belgium

126

European Patient Group Directory 2011–2012

T: +32-498-701-503 / +31-516-523-773 F: +32-3-775-48-39 Email: FINPresident@myconnect.org

Activities and campaigns Geographic areas of operation: Global, but mostly Europe. Key activities: Organisation and network that collaborates with individual national Fabry patient organisations to improve the lives of Fabry patients (and their families and caregivers). Educates the public about Fabry disease, promotes best practice in the diagnosis and treatment of the condition, and helps establish national Fabry patient organisations. Provides an independent forum for Fabry patient organisations. Key campaigns: Membership survey about the short supply of enzyme-replacement therapy (ERT). Objectives for 2012 onwards: “FIN aims to be a global, independent network of Fabry patient associations, collaborating, communicating, and promoting best practice. FIN’s vision is a world in which every person affected by Fabry disease has the best quality of life possible through early diagnosis, treatment and cure.”

Main contact: Lutgarde (Lut) De Baere Position of main contact: President Name of representative in Brussels: Lutgarde (Lut) De Baere Position of representative in Brussels: President Contact for representative in Brussels: Lutd@myconnect.org

Members and memberships Number of member groups: 20 member groups in 18 European countries. Countries of member groups: Belgium, Bulgaria, Denmark, Finland, France, Germany (2), Ireland, Italy, Lithuania, Netherlands, Norway, Poland, Portugal, Slovakia, Spain (2), Sweden, Switzerland, UK. Groups to which organisation is affiliated: European Organisation for Rare Diseases (EURORDIS). Current affiliations with the EU: Involved in the activities of the European Medicines Agency (EMA). Revenue Most recent yearly revenue: €85,101 (2010). Pharmaceutical funding: 2010: Amicus Therapeutics (€3,000). 2011: Genzyme (€26,000); Shire (€20,000). Main sources of funding: Interaction Institute for Social Change; pharmaceutical companies.

Auto-Immune and Immune Diseases

Federation of European Scleroderma Associations (FESCA) http://www.fesca-scleroderma.eu 33 Rue Marcel Baudry 7503 Froyennes Belgium

Main contact: Ana Aja Pando Position of main contact: Secretary

T: +32-20-8965-4094 Email: info@fesca-scleroderma.eu ; anaaja@ hotmail.com

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Activities and campaigns Geographic areas of operation: Europe. Key activities: Umbrella patient organisation linking scleroderma support groups throughout the EU. Acts as an informational clearing house for patients and the medical community, helping scleroderma organisations throughout Europe cross the barriers of language, differing medical and social systems, lack of awareness, and inaccessible medical information. Key campaigns: Supports ‘International Scleroderma Day’ and ‘European Scleroderma Day’ (both every June), ‘Rare Disease Day’ (every February), and ‘Franco-Belgian Day of Scleroderma’ (every October). Objectives for 2012 onwards: “FESCA is now working on developing its own Facebook page. Ultimately, we will educate the world, patients, and doctors about scleroderma.”

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: 20 member associations from 15 European countries. Countries of member groups: Belgium (2), Croatia, Cyprus, Denmark, France, Germany, Hungary, Ireland, Italy (4), Netherlands, Poland, Portugal, Spain, Switzerland, UK (2). Groups to which organisation is affiliated: European Organisation for Rare Diseases (EURORDIS).

Genetic and Rare Diseases

Federation of European Williams Syndrome Associations (FEWS) http://www.eurowilliams.org c/o Tervuursesteenweg 30 3001 Heverlee Belgium

Main contact: Paul Pyck Position of main contact: Secretary

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T: +44-(0)1483-548-900 Email: paul.pyck@skynet.be

Activities and campaigns Geographic areas of operation: Europe. Key activities: Formed by organisations around Europe that share the aim of improving the lives of people suffering from Williams syndrome (a disorder caused by an abnormality in chromosomes). Spreads awareness of this rare syndrome, and promotes scientific research projects. Runs annual summer camps for affected children. Objectives for 2012 onwards: “All of the FEWS committee members are parents or carers of Williams people, and are dedicated to the common goal of bettering the lives of people with Williams syndrome.”

Members and memberships Number of member groups: 15 member organisations in 13 European countries. Countries of member groups: Belgium, France (2), Germany (2), Hungary, Ireland, Italy, Netherlands, Norway, Romania, Slovakia, Spain, Sweden, UK. Groups to which organisation is affiliated: European Organisation for Rare Diseases (EURORDIS). Revenue Most recent yearly revenue: €6,874 (2010). Pharmaceutical funding: None. Main sources of funding: Membership subscriptions; fundraising.

Reproductive and Sexual Health

Fertility Europe (FE) http://www.fertilityeurope.eu Rijsenbergstraat 150 9000 Ghent Belgium

Main contact: Claire Lewis-Jones Position of main contact: Chair

Email: info@fertilityeurope.eu

European Patient Group Directory 2011–2012

Revenue Main sources of funding: European Society of Human Reproduction and Embryology (ESHRE); membership fees.

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Activities and campaigns Geographic areas of operation: Europe. Key activities: Democratic association that aims to build a cross-border network among European patients and professionals on behalf of the one-in-six couples who need help to conceive and are facing obstacles. Exchanges information on best practise, educates in the field of protection of reproductive health, and works to improve the rights of people affected by difficulties in conceiving. Key campaigns: Runs the ‘Special Families’ campaign.

Members and memberships Number of member groups: 25 full and associate member organisations from 22 European countries. Countries of member groups: Austria, Belgium, Bulgaria (2), Croatia, Czech Republic, Finland, France (2), Germany, Greece, Hungary, Italy (2), Latvia, Netherlands, Norway, Poland, Portugal, Romania, Slovakia, Spain, Sweden, Switzerland, Turkey, UK. Groups to which organisation is affiliated: European Patients’ Forum (EPF).

Mental Health

GAMIAN-Europe (Global Alliance of Mental Illness Advocacy Networks-Europe; GE) http://www.gamian.eu GAMIAN-Europe Secretariat c/o 424 St. Joseph High Street St. Venera SVR1013 Malta

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European Patient Group Directory 2011–2012

T: +32-49-452-7980 Email: info@gamian.eu

Activities and campaigns Geographic areas of operation: Mainly Europe. Key activities: Patient-driven pan-European organisation that represents the interests of people affected by mental illness, and advocates for their rights. Promotes information, education and awareness. Supports research projects on mental illness, and helps in the dissemination of results. Assists member organisations. Key campaigns: Supports designating ‘2014 European Year of the Brain (EYoB)’.

Main contact: Paul Arteel Position of main contact: Executive Director Name of representative in Brussels: Paul Arteel Position of representative in Brussels: Executive Director Contact for representative in Brussels: executive.director@gamian.eu

Members and memberships Number of member groups: 67 member organisations from 26 European countries. Countries of member groups: Austria, Belgium (4), Croatia (3), Czech Republic (2), Denmark, Estonia, France (4), Greece (4), Hungary (4), Iceland, Ireland (3), Italy (6), Latvia (2), Lithuania (2), Malta, Netherlands (2), Norway, Poland (2), Portugal, Romania, Slovakia, Slovenia (2), Spain (4), Sweden (3), Turkey (2), UK (9). Groups to which organisation is affiliated: European Brain Council (EBC); European Patients’ Forum (EPF); European Platform for Patients’ Organisations, Science and Industry (EPPOSI); International Alliance of Patients’ Organizations (IAPO). Current affiliations with the EU: Involved in the activities of the European Medicines Agency (EMA). Co-chairs the DG SANCO Expert Platform on Depression. Provides the secretariat for the European Parliament Interest Group on Mental Health. Revenue Most recent yearly revenue: €117,000 (20092010), according to the Register of the European Transparency Initiative (ETI). Pharmaceutical funding: 2010: GSK; Lundbeck; Pfizer Europe (each donating €25,000-€27,000). Main sources of funding: Pharmaceutical companies; other donors; membership fees.

Cancer / Gastrointestinal

Global GIST Network (GGN) http://www.globalgist.org c/o Das Lebenhaus e.V. Usa-Straße 1 61231 Bad Nauheim Germany

Email: info@globalgist.org / globalgistnet@lebenshauspost.org Main contact: Markus Wartenberg Position of main contact: European Co-ordinator

T: +49-6032-9492-881 F: +49-6032-9492-885

European Patient Group Directory 2011–2012

Revenue Most recent yearly revenue: The GGN notes that, as an informal network, it has no funding. Pharmaceutical funding: None. Main sources of funding: The two main founder organisations (Das Lebenshaus e.V.; Life Raft Group Association).

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Activities and campaigns Geographic areas of operation: Worldwide (including Europe). Key activities: Association of patient advocates and organisations that aims to provide information and support to GIST patients and their families, as well as raise GIST awareness. Offers assistance and materials in multiple languages to strengthen resources in a given region. Lists GIST experts and available clinical trials. Key campaigns: ‘Crossing Borders to Unite Against GIST’. Objectives for 2012 onwards: “Organisations in the GGN link member sites to its web pages, to share information about local resources (including clinical trials), and to support the access of GIST patients to treatment.”

Members and memberships Number of member groups: 13 member organisations from 14 European countries, plus 7 individuals acting as liaison in another 7 European countries. Countries of member groups: Belgium, Czech Republic, Finland, France, Germany, Hungary, Italy, Netherlands, Norway, Poland, Romania, Spain, Switzerland, UK. Groups to which organisation is affiliated: Association of Cancer Online Resources (ACOR); Das Lebenshaus.

Cancer

Global Lung Cancer Coalition (GLCC) http://www.lungcancercoalition.org GLCC Secretariat c/o The Roy Castle Lung Cancer Foundation Rothesay House 134 Douglas Street Glasgow G2 4HF Scotland

Main contact: Jesme Fox Position of main contact: Secretary

T: +44-(0)141-331-4530 Email: glcc@roycastle.org

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European Patient Group Directory 2011–2012

Members and memberships Number of member groups: 18 member organisations from 13 European countries. Countries of member groups: Bulgaria, Denmark, France, Germany, Ireland, Italy (3), Netherlands, Norway, Slovenia, Spain, Sweden, Switzerland, UK (4).

Activities and campaigns Geographic areas of operation: Europe (and worldwide). Key activities: International voice of lung cancer patients, with a Europe-oriented membership. Promotes understanding of lung cancer, and raises awareness of the subject. Provides a forum for members to network, share ideas, and to learn from each others’ initiatives. Aims to effect change in legislative or regulatory policies to optimise treatment and care.

Revenue Pharmaceutical funding: 2011: Boehringer Ingelheim; GSK; Pfizer Oncology (each donating £30,000/approximately €33,000 or more).

Civic and Consumer with Interest in Healthcare

Health Action International-Europe (HAI-Europe) http://www.haiweb.org/01_about_europe_a.htm Overtoom 60/II 1054 HK Amsterdam Netherlands

Main contact: Teresa Alves Position of main contact: Coordinator

T: +31-(0)20-683-36-84 F: +31-(0)20-685-50-02 Email: info@haiweb.org / teresa@haieurope.org

European Patient Group Directory 2011–2012

Revenue Most recent yearly revenue: €502,000 from the parent organisation, HAI (2010). Pharmaceutical funding: Does not accept funding from commercial entities. Main sources of funding: 2010: the parent organisation, HAI, drew income from international donors (€83,000, WHO); and government subsidies (€1.3m, Ministry of Foreign Affairs, Netherlands). 2011: Executive Agency for Health and Consumers (EAHC) (€20,000).

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Activities and campaigns Geographic areas of operation: Europe. Key activities: Non-profit European network of consumers, public-interest NGOs, healthcare providers, academics, media and individuals representing the voice of civil society in medicines policy debates. Advocates for greater transparency of decision making around pharmaceuticals, promotes the rational use of medicines, and works for the provision of unbiased, independent information for prescribers and consumers.

Members and memberships Number of member groups: 24 member organisations in 14 European countries. Countries of member groups: Belgium, Cyprus, Finland, France (2), Germany (4), Greece (2), Hungary, Latvia, Netherlands, Poland, Spain, Sweden, Switzerland (4), UK (3). Groups to which organisation is affiliated: European Public Health Alliance (EPHA). Current affiliations with the EU: Member of the European Medicines Agency (EMA) Patients’ and Consumers’ Working Party (PCWP).

Public Health

Health and Environment Alliance (HEAL) http://www.env-health.org 28 Boulevard Charlemagne 1000 Brussels Belgium

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T: +32-2-234-36-40 F: +32-2-234-36-49 Email: info@env-health.org

Activities and campaigns Geographic areas of operation: Mainly Europe. Key activities: Network of international and national not-for-profit organisations of citizens, patients, health professionals, environmental groups and public-health institutes. Raises awareness of how environment affects health, and demonstrates how policy changes can help protect health and enhance people’s quality of life. Key campaigns: Runs ‘Sick of Pesticides’, and ‘Prescription for a Healthy Planet’. Supports ‘International Week Without Pesticides’ (every March). Current EU-funded projects: Partner in ‘Consortium to Perform Human Biomonitoring on a European Scale (COPHES)’, 2009-2012, funded by DG Research and Innovation under the 7th Framework Programme.

Main contact: Génon Jensen Position of main contact: Executive Director Name of representative in Brussels: Génon Jensen Position of representative in Brussels: Executive Director Contact for representative in Brussels: genon@env-health.org

Members and memberships Number of member groups: 59 national, European or international member organisations from 22 European countries. Countries of member groups: Austria, Belgium (8), Bulgaria (4), Croatia (2), Czech Republic, France (4), Germany (2), Hungary (5), Ireland, Italy, Luxembourg (2), Malta, Macedonia (3), Montenegro, Netherlands (7), Poland, Romania (2), Serbia, Slovenia, Sweden, Switzerland, UK (9). Groups to which organisation is affiliated: Alliance for Lobbying Transparency and Ethics Regulation in the EU (ALTER-EU); European Environmental Citizens Organisation for Standardisation (ECOS); Green 10; International POPS Elimination Network (IPEN). Current affiliations with the EU: Member of the DG SANCO Expert Group on Indoor Air Quality. Member of the DG SANCO European Partnership for Action Against Cancer (EPAAC). Revenue Most recent yearly revenue: €537,000 (20102011), according to the Register of the European Transparency Initiative (ETI). Main sources of funding: 2010-2011, according to the Register of the European Transparency Initiative (ETI): European Commission (€356,000); members’ contributions (€2,000).

General Healthcare

Health Care Without Harm Europe (HCWH Europe) http://www.noharm.org/europe 1 Rue de la Pépinière 1000 Brussels Belgium T: +32-2503-3137 F: +32-2402-3042 Email: europe@hcwh.org

Main contact: Anja Leetz Position of main contact: Executive Director Name of representative in Brussels: Dr Pendo Maro Position of representative in Brussels: Senior Climate and Energy Advisor Contact for representative in Brussels: pendo.maro@hcwh.org

Revenue Most recent yearly revenue: €313,000 (2009). Pharmaceutical funding: HCWH states that it does not accept financial support from manufacturers. Main sources of funding: Health Care Without Harm (HCWH); European Climate Foundation; WHO.

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Activities and campaigns Geographic areas of operation: WHO European region. Key activities: European element of a global coalition working to ensure that the healthcare sector is ecologically sustainable and does not compromise public health, the environment, or patient safety and care. Aims to allow patients, healthcare workers, and policy makers to access information on climate, energy, materials used in healthcare, and issues linked to health provision and care, in order to increase informed decision making about health policies across Europe. Maintains an online library on environmentally responsible healthcare. Key campaigns: Runs ‘Prescription for a Healthy Planet’. ‘Acting Now for Better Health’, HCWH’s 30% reduction target for EU climate policy. ‘Mercury-Free Health Care’, an HCWH/WHO initiative to substitute mercury-based medical devices.

Members and memberships Number of member groups: 67 member organisations (including government bodies and professional societies) from 18 European (plus Asian) countries. Countries of member groups: Austria, Belgium, Czech Republic, Denmark, France, Germany, Ireland, Italy, Macedonia, Netherlands, Poland, Romania, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK. Groups to which organisation is affiliated: European Environmental Citizens’ Organisation for Standardisation (ECOS); Health Care Without Harm (HCWH).

European Patient Group Directory 2011–2012

Objectives for 2012 onwards: “HCWH aims to educate European policymakers and health providers about the impact of policies on health. We want them to be prepared for the health challenges of cancer, climate change, diabetes, infectious diseases, and obesity.”

Public Health

Health First Europe (HFE) http://www.healthfirsteurope.org 214d Chaussee de Wavre 1050 Brussels Belgium T: +32-2-626-19-99 F: +32-2-626-95-01 Email: info@healthfirsteurope.org

Main contact: Amanda Bogg Position of main contact: Policy Advisor Name of representative in Brussels: Amanda Bogg Position of representative in Brussels: Policy Advisor Contact for representative in Brussels: info@healthfirsteurope.org

Members and memberships Number of member groups: 5 European or international patient groups are included among the member organisations. Current affiliations with the EU: Attends meetings of the European Parliament Interest Group on Rheumatic and Musculoskeletal Diseases (RMDs).

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European Patient Group Directory 2011–2012

Revenue Main sources of funding: Funded by member organisations.

Activities and campaigns Geographic areas of operation: Europe. Key activities: Non-profit, non-commercial alliance of patients, healthcare workers, academics, healthcare experts, and industry. Calls for patient-centred healthcare, and believes that European citizens should benefit from the best medical treatments. Raises awareness and communicates core messages to EU decisionmakers and opinion leaders through events and publications. Key campaigns: Supports ‘European Patients’ Rights Day’ (every April). Objectives for 2012 onwards: “HFE priorities will include the issues of patient safety, health technology assessment (HTA), eHealth, and the Innovation Partnership on Active and Healty Ageing.”

Disability

Hear-it AISBL http://www.hear-it.org

Avenue Tervuren 35 1040 Brussels Belgium T: +32-477-53-25-89 Email: hear-it@hear-it.org

Main contact: Kim Ruberg Position of main contact: General Secretary Name of representative in Brussels: Kim Ruberg Position of representative in Brussels: General Secretary Contact for representative in Brussels: hear-it@hear-it.org

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Activities and campaigns Geographic areas of operation: Europe. Key activities: International non-profit and non-commercial organisation that collects, processes and circulates information about hearing impairments and their human and socio-economic consequences. Cooperates with national organisations, dialogues with public authorities and others on hearing impairment issues, and runs the world’s largest website on hearing and hearing loss. Key campaigns: Supports designation of ‘2012 European Year for Active Ageing and Intergenerational Solidarity’.

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: 3 international bodies as members, one of which, the International Federation of the Hard Of Hearing (IFHOH), is a patient organisation.

HIV/AIDS

HIV Europe http://www.hiveurope.org

c/o Hiv-Danmark Skindergade 44, 2. th, 1159 Copenhagen Denmark

Main contact: Henrik Arildsen Position of main contact: Chairman

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T: +45-33-32-58-68 Email: henrikarildsen@hiveurope.org / hiveurope@hiveurope.org

Activities and campaigns Geographic areas of operation: Europe. Key activities: Independent, voluntary and non-profit umbrella association of patient organisations committed to the greater involvement of people living with HIV and AIDS (PLWHA) in the development of public policy and the delivery of services. Aims to eradicate the stigma and discrimination experienced by PLWHA in Europe, and to improve the quality of life, care and treatment of PLWHA (and their carers).

Members and memberships Number of member groups: 25 member associations from 22 European countries. Countries of member groups: Albania, Croatia, Czech Republic, Denmark, Estonia, Finland, Greece, Hungary, Iceland, Italy, Kosovo, Latvia, Lithuania, Norway, Poland, Portugal (2), Romania, Serbia, Sweden, Switzerland (2), Turkey, UK (2). Groups to which organisation is affiliated: None. Many member organisations are members of the European AIDS Treatment Group (EATG). Current affiliations with the EU: Member of the DG SANCO HIV/AIDS Civil Society Forum (CSF). Revenue Pharmaceutical funding: Bristol-Myers Squibb; Gilead Sciences. Main sources of funding: Donations; grants; membership fees.

ÂŠ Burson-Marsteller/PatientView

Genetic and Rare Diseases / Scientific Research

Hypophosphatasie Europe http://www.hypophosphatasie.com

16 rue Barbanègre 68330 Huningue France

Main contact: Steve Ursprung Position of main contact: Chair

Email: contact@hypophosphatasie.com

Members and memberships Number of member groups: Member patients; no member groups. Groups to which organisation is affiliated: Alliance Maladies Rares; European Organisation for Rare Diseases (EURORDIS).

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Activities and campaigns Geographic areas of operation: Europe. Key activities: European association of people with hypophosphatasia (a very rare genetic disease of bone and teeth that affects less than one-in-100,000 individuals). Functions on a European scale on behalf of the small number of patients with the condition per country. Brings together patients, doctors and researchers to work together against hypophosphatasia. Supplies information in three languages. Key campaigns: Runs a hypophosphatasia information campaign for health professionals. Objectives for 2012 onwards: “Hypophosphatasie Europe encourages all patients and their families to increase the influence of the association by joining it at this time of discussions at international level.”

European Patient Group Directory 2011–2012

Revenue Pharmaceutical funding: None in the most recent year. Main sources of funding: Gifts, grants, sponsorship.

General Healthcare

Iatrogenic Europe Unite (IEU-Alliance) http://www.ieu-alliance.org c/o the Action on Medical Negligence Association (AMNA) 27 Woodford Drive Armagh BT60 2AY Northern Ireland, UK

Main contact: Eamon Duffy Position of main contact: Co-ordinator

T: +44-(0)-2837-527-307 Email: amnarayni@hotmail.com

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European Patient Group Directory 2011–2012

Members and memberships Number of member groups: 7 national member groups in 4 European countries. Countries of member groups: Germany (2), Ireland, Netherlands, UK (3).

Activities and campaigns Geographic areas of operation: Europe (and international). Key activities: Alliance of seven European patient groups each working with, and supporting, victims of serious medical errors in their respective countries. Discusses the common problems facing victims of serious medical errors, and promotes patient safety by advocating for statutory enactment of patients’ rights. Key campaigns: IEU-Alliance ‘Declaration on Patient Safety’.

Learning Disability

Inclusion Europe http://www.inclusion-europe.org

Activities and campaigns Geographic areas of operation: Europe. Key activities: Non-profit organisation that campaigns for the rights and interests of people with an intellectual disability (and their families) throughout Europe. Fights for human rights for people with an intellectual disability, inclusion in society, and non-discrimination. Aims to exchange knowledge and experience. Key campaigns: Supports ‘European Day of People with Disabilities’ (every December). Objectives for 2012 onwards: “The new EU Disability Strategy 2010-2020 will be a key document for Inclusion Europe. We and our members support implementation of the Strategy, and renew our commitment to building an accessible European society that includes everyone.” Current EU-funded projects: Partner in ‘Children’s Rights for All’, 2009-2011, funded by the DG Justice DAPHNE III programme 2007-2013.

Members and memberships Number of member groups: 62 member organisations from 34 European countries, and 3 Europe-wide or international members. Countries of member groups: Albania, Austria (2), Belgium, Bosnia (2), Bulgaria (2), Croatia (3), Cyprus, Czech Republic (3), Denmark (2), Estonia (2), Finland (4), France (3), Germany (3), Greece, Hungary (2), Iceland, Ireland (2), Italy, Latvia (2), Lithuania, Luxembourg (2), Macedonia, Malta (2), Netherlands, Norway (2), Poland, Portugal (2), Romania, Slovakia, Slovenia (2), Spain (2), Sweden (2), Switzerland, UK (3). Groups to which organisation is affiliated: European Disability Forum (EDF); Platform of European Social NGOs (Social Platform). Revenue Most recent yearly revenue: €440,000 (2009). Main sources of funding: DG Employment, Social Affairs and Equal Opportunities. Membership fees provide about one third of income.

European Patient Group Directory 2011–2012

T: +32-2-502-28-15 F: +32-2-502-80-10 Email: information@inclusion-europe.org

Main contact: Helen Holand Position of main contact: Secretary General Name of representative in Brussels: Geert Freyhof Position of representative in Brussels: Director, Brussels Office Contact for representative in Brussels: secretariat@inclusion-europe.org

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Galeries de la Toison d’Or 29 Chaussee d’Ixelles, bte 393/32 1050 Brussels Belgium

General Healthcare

International Alliance of Patients’ Organizations (IAPO) http://www.patientsorganizations.org 703 The Chandlery 50 Westminster Bridge Road London, SE1 7QY UK

Main contact: Joanna Groves Position of main contact: Chief Executive Officer

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T: +44-(0)-20-7721-7508 F: +44-(0)-20-7721-7596 Email: info@patientsorganizations.org

Activities and campaigns Geographic areas of operation: Global (including Europe). Key activities: Global alliance representing patients of all nationalities across all disease areas, and promoting patient-centred healthcare around the world. Members are patients’ organisations working at the international, regional, national and local levels to represent and support patients, their families and carers. Has European members, and is involved in European healthcare issues. Key campaigns: The WHO ‘Patients for Patient Safety (PFPS)’ programme. Objectives for 2012 onwards: “For 2010-2014, IAPO plans to strengthen the impact of the global patients’ voice in decision-making processes globally, increase the participation of IAPO member patient representatives in IAPO’s work, and develop IAPO’s own capacity and sustainability.” Current EU-funded projects: Partner in ‘Pharmacoepidemiological Research on Outcomes of Therapeutics by a European Consortium (PROTECT)’, 2009-2014, funded by the the Innovative Medicines Initiative (IMI), which, in turn, is partly funded by the 7th Framework Programme. Members and memberships Number of member groups: 84 full member organisations and 9 associate member organisations from 24 European countries, plus 10 pan-European organisations (and 7 international organizations based in Europe).

Countries of member groups: Bulgaria (5), Croatia (3), Cyprus (3), Czech Republic (3), Denmark, Estonia, Finland, Germany (2), Greece, Hungary (6), Ireland (4), Italy, Lithuania, Macedonia, Netherlands (2), Poland (4), Portugal (2), Romania (2), Serbia, Slovakia (2), Slovenia (4), Spain (15), Turkey (2), UK (18). Groups to which organisation is affiliated: Health First Europe (HFE). Current affiliations with the EU: Member of the European Medicines Agency (EMA) Patients’ and Consumers’ Working Party (PCWP). Member of the DG SANCO EU Health Policy Forum (EUHPF). Revenue Most recent yearly revenue: US$784,000/ approximately €549,000 (2010). Pharmaceutical funding: 2010 gold donors, each giving US$50,000/approximately €35,000 were: Eli Lilly; GSK; International Federation of Pharmaceutical Manufacturers and Associations (IFPMA); Novartis; Pfizer; Pharmaceutical Research and Manufacturers of America (PhRMA); Sanofi-Aventis. 2010 silver donors, each giving US$25,000/approximately €17,000 were: Amgen; Johnson & Johnson. Also a funder: Novo Nordisk. Main sources of funding: 2010: corporate sponsors (US$500,000/approximately €350,000); Global Patients’ Congress (US$185,000/ approximately €129,000); membership fees (US$15,000/approximately €10,000).

Cancer

International Brain Tumour Alliance (IBTA) http://www.theibta.org PO Box 244 Tadworth Surrey KT20 5WQ UK

Main contact: Kathy Oliver Position of main contact: Co-Director

T: +44-(0)-1737-813-872 F: +44-(0)-1737-812-712 Email: kathy@theibta.org

Revenue Pharmaceutical funding: In 2010: Antisense Pharma; AstraZeneca; Boehringer Ingelheim; Eli Lilly; Merck Serono; MSD Oncology; Novartis; NovoCure. Main sources of funding: Pharmaceutical companies; charitable organisations; individuals.

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Activities and campaigns Geographic areas of operation: Europe (and international). Key activities: Builds awareness about the challenges of brain tumours, and advocates for equal access to therapies. Supports moves towards greater international collaboration between brain tumour patient and caregiver groups, clinicians, commercial organisations, researchers and allied healthcare professionals with an interest in this disease area. Key campaigns: Runs ‘International Brain Tumour Awareness Week’ (usually October/ November), and ‘Walk Around the World for Brain Tumours’ (every January to November). Objectives for 2012 onwards: “The IBTA will encourage the establishment of brain tumour patient support, information and advocacy groups in countries where they do not exist, and will continue to publish ‘Brain Tumour’ magazine (copies distributed to 83 countries in 2011).”

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: 197 brain tumour and cancer-relevant organisations supported the IBTA’s work in 2010 in a non-financial way as supporters, not as members. Groups to which organisation is affiliated: Cancer 52; European Action Against Rare Cancers (EAARC); European Cancer Patient Coalition (ECPC); European Federation of Neurological Associations (EFNA).

Neurological Conditions

International Bureau for Epilepsy-Europe (IBE-Europe) http://www.ibe-epilepsy.org/regions/?c=Europe IBE International headquarters 11 Priory Hall Stillorgan Blackrock Co. Dublin, Ireland

Main contact: Aisling Farrell Position of main contact: Secretary

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T: +353-1-210-88-50 F: +353-1-210-84-50 Email: ibedublin@eircom.net

Activities and campaigns Geographic areas of operation: Europe. Key activities: The European region of an international organisation for national epilepsy organisations. Supports the development of new and existing members, exchanges information, and sets standards that provide an international policy focus and an identity for people with epilepsy. Key campaigns: Partner in ‘European Epilepsy Day’ (every February). Objectives for 2012 onwards: “IBE-Europe will work towards public awareness of epilepsy, upgrading care, and aiming for a better quality of life for less-privileged Europeans with epilepsy.”

Members and memberships Number of member groups: 50 member organisations (mainly patient groups) in 31 European countries. Countries of member groups: Austria, Belgium, Bulgaria (2), Croatia, Cyprus, Czech Republic (3), Denmark (2), Estonia, Finland, France (4), Germany (2), Greece, Hungary, Iceland, Ireland, Italy, Lithuania (2), Macedonia, Malta, Netherlands (4), Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland (3), UK (6). Groups to which organisation is affiliated: International Bureau for Epilepsy (IBE). Revenue Most recent yearly revenue: The parent organisation, IBE: US$2.2m/approximately €1.5m (2009). Pharmaceutical funding: To the parent, IBE, in 2009: Dainippon Sumitomo Pharma Co Ltd; Eisai Europe Ltd; UCB Pharma. GSK points out that its 2010 donation of €20,000 to the parent, IBE, represented 3% of the organisation’s revenue that year. Main sources of funding: Commerce and industry; international congresses; membership dues.

Heart and Circulatory Diseases

International Cholesterol Foundation (Interchol; ICF) http://www.interchol.org PO Box 592 Abingdon Oxfordshire OX14 9FX UK

Main contact: Michael Livingston Position of main contact: Contact person

T: +44-(0)-1235-84-7187 Email: ask@interchol.org / ml@interchol.org

Members and memberships Number of member groups: 3 member patient organisations from 3 European countries. Countries of member groups: Norway, Spain, UK. Groups to which organisation is affiliated: European Platform for Patients’ Organisations, Science and Industry (EPPOSI).

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Activities and campaigns Geographic areas of operation: Europe. Key activities: Formed in 2010 from the merger of HEART EU and MEDPED International. Partnership of patient groups and clinicians that advocates for improved medical management of people with inherited hypercholesterolaemia. Uses government links to campaign for the implementation of preventive screening programmes. Objectives for 2012 onwards: “Interchol is now seeking additional European partners to join an active committee to create, underwrite, and take action at European Parliament level for the adoption of targeted and cost-effective preventive screening programmes.”

European Patient Group Directory 2011–2012

Revenue Most recent yearly revenue: Not yet available at time of publication of this Directory.

Diabetes

International Diabetes Federation-European Region (IDF-Europe) http://www.idf.org/regions/europe IDF-Europe 166 Chaussée de la Hulpe 166 1170 Brussels Belgium

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European Patient Group Directory 2011–2012

T: +32-2-538-55-11 F: +32-2-538-55-14 Email: idfeurope@idf-europe.org

Activities and campaigns Geographic areas of operation: Europe (and global). Key activities: One of seven regional groupings in its international parent organisation. Advocates for people with diabetes and their healthcare providers, provides members with policy support, professional guidelines, information sharing, and venues for ideas exchange. Key campaigns: Supports ‘World Diabetes Day’ (every November), and ‘European Year of Volunteering 2011’. Objectives for 2012 onwards: “IDF-Europe aims to raise awareness about diabetes among the EU institutions, and to put diabetes on the EU political agenda. We want to increase the profile of diabetes at EU political level, and influence political decisions that concern diabetes.” Current EU-funded projects: Partner in two projects: ‘Personal Glucose Predictive Diabetes Advisor (DIAdvisor)’, 2008-2012, funded by Information and Communication Technologies (ICT) Research under the 7th Framework Programme; and ‘Artificial Pancreas@home (AP@home)’, 2010-2014, funded by the 7th Framework Programme. Members and memberships Number of member groups: 51 member organisations from 35 European countries. Countries of member groups: Albania, Austria, Belgium (2), Bulgaria, Croatia, Cyprus, Czech Republic (2), Denmark, Estonia, Finland, France,

Main contact: Sophie Peresson Position of main contact: Regional Manager Name of representative in Brussels: Sophie Peresson Position of representative in Brussels: Regional Manager Contact for representative in Brussels: idfeurope@idf-europe.org

Germany, Greece (2), Hungary (2), Iceland, Ireland, Italy (5), Latvia (2), Lithuania, Luxembourg, Macedonia, Malta, Netherlands (2), Norway, Poland (2), Portugal (2), Romania, Serbia (2), Slovakia (2), Slovenia, Spain, Sweden (2), Switzerland, Turkey (2), UK. Groups to which organisation is affiliated: European Chronic Disease Alliance (ECDA); European Patients’ Forum (EPF); European Public Health Alliance (EPHA); Health First Europe (HFE). Current affiliations with the EU: Member of the European Parliament EU Diabetes Working Group (EUDWG). Member of the DG SANCO EU Platform for Action on Diet, Physical Activity and Health. Member of the DG SANCO EU Health Policy Forum (EUHPF). Member of the European Medicines Agency (EMA) Patients’ and Consumers’ Working Party (PCWP), and observer at the EMA Healthcare Professionals’ Working Group (HCPWG). Revenue Most recent yearly revenue: Approximately €625,000 in 2010, according to GSK. Pharmaceutical funding: 2010: AstraZeneca; Bayer; Bioton; Eli Lilly; GSK; Merck Sharp & Dohme; Novartis; Novo Nordisk; Pfizer Europe; Sanofi Aventis. GSK points out that its 2010 donation of €25,000 represented less than 4% of the organisation’s revenue that year. Main sources of funding: Medical device and pharmaceutical companies; IDF Global (€25,000 annually); member associations.

Congenital

International Federation for Spina Bifida and Hydrocephalus (IF) http://www.ifglobal.org Cellebroersstraat 16 1000 Brussels Belgium T: +32-(0)2-502-0413 F: +32-(0)2-502-1129 Email: info@ifglobal.org Main contact: Lieven Bauwens

Position of main contact: Secretary General Name of representative in Brussels: Lieven Bauwens Position of representative in Brussels: Secretary General Contact for representative in Brussels: lieven.bauwens@ifglobal.org

Revenue Most recent yearly revenue: €854,000 (2010). Pharmaceutical funding: 2010: Bayer Schering Healthcare. Main sources of funding: 2010: DG Employment, Social Affairs and Equal Opportunities; Norwegian Agency for Development Cooperation (Norad).

147

Activities and campaigns Geographic areas of operation: Europe and worldwide. Key activities: World-wide umbrella organisation for spina bifida and hydrocephalus regional and national organisations. Aims to disseminate information and expertise to families, individuals, professionals and volunteers, improve the quality of life of people with spina bifida and hydrocephalus, and to decrease the prevalence of spina bifida and hydrocephalus by primary prevention. Objectives for 2012 onwards: “In the future, IF will act as a human rights advocate, voicing the concerns of our target group. We will work for primary prevention, aim for international solidarity, and develop our network of organisations.”

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: 28 member organisations from 24 European countries. Countries of member groups: Austria, Belgium, Croatia, Denmark, Estonia, Finland, France, Germany, Greece, Ireland, Italy (2), Luxembourg, Netherlands, Norway, Poland (2), Portugal, Romania, Serbia, Slovakia, Spain (2), Sweden, Switzerland, Turkey, UK (2). Groups to which organisation is affiliated: European Disability Forum (EDF).

Bone

International Osteoporosis Foundation (IOF) http://www.iofbonehealth.org 9 rue Juste-Olivier 1260 Nyon Switzerland

Main contact: Patrice McKenney Position of main contact: Chief Executive Officer

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European Patient Group Directory 2011–2012

T: +41-22-994-01-00 F: +41-22-994-01-01 Email: info@iofbonehealth.org

Activities and campaigns Geographic areas of operation: Europe (and worldwide). Key activities: Global alliance of patient, medical, and research societies, scientists, healthcare professionals, and corporate partners across many fields. Increases awareness and understanding of osteoporosis, motivates people to take action to prevent, diagnose, and treat osteoporosis, and supports national osteoporosis societies. Key campaigns: Supports ‘World Osteoporosis Day (WOD)’ (every October). Objectives for 2012 onwards: “One of the most important IOF objectives over the next few years is to collaborate with patient groups in other disease areas, to put chronic disease (including bone health) on the agenda of EU Member States. We will also roll out ‘OsteoLink’, the IOF social network, across more countries.” Current EU-funded projects: Joint lead in ‘Osteolink’, 2010-2011, funded by the Ambient Assisted Living Joint Programme (AAL JP).

Members and memberships Number of member groups: 104 member organisations (many of which are patient groups) from 34 European countries. Countries of member groups: Austria (4), Belgium (3), Bulgaria (5), Croatia (2), Cyprus (2), Czech Republic (3), Denmark (2), Estonia, Finland (2), France (5), Germany (11), Greece (4), Hungary (2), Iceland, Ireland, Italy (10), Latvia (2), Lithuania (2), Luxembourg, Macedonia, Malta, Netherlands (2), Norway, Poland (4), Portugal (3), Romania (4), Serbia, Slovakia (2), Slovenia (2), Spain (6), Sweden (3), Switzerland (2), Turkey (6), UK (3). Revenue Most recent yearly revenue: CHF10.4m/ approximately €8.6m (2010). Pharmaceutical funding: 2010: Alliance for Better Bone Health (ABBH) [compromising Procter & Gamble Pharmaceuticals, SanofiAventis]; Amgen; Bio Sidus Argentina; Chugai Pharmaceutical Co. Ltd; Eli Lilly; MSD; Novartis; Pablo Cassará Argentina; Pfizer México; Roche; Rottapharm Madaus; Roux Ocefa; Servier; Warner Chilcott. GSK points out that its 2010 donation of $745,000/€530,000 represented 5% of the organisation’s revenue that year. Main sources of funding: 2010: pharmaceutical companies; medical device companies; medical supplies manufacturers; other healthcare-related or non-healthcare companies; congress and membership fees; foundation grants; European Commission (Osteolink project).

Primary Immunodeficiencies

International Patient Organisation for Primary Immunodeficiencies (IPOPI) http://www.ipopi.org Rue du Marché aux Herbes 105, B 14 1000 Brussels Belgium

Main contact: Johan Prevot Position of main contact: Executive Director

T: +44-(0)1503-250-668 F: +44-(0)1503-250-961 Email: info@ipopi.org

European Patient Group Directory 2011–2012

Revenue Pharmaceutical funding: Baxter; CLS Behring; Grifols; Kedrion; Laboratoire Français du Fractionnement et des Biotechnologies (LFB); Octapharma; Talecris. Main sources of funding: Pharmaceutical companies; national member organisations.

149

Activities and campaigns Geographic areas of operation: Global. Key activities: Association of national patient organisations dedicated to improving awareness, access to early diagnosis, and optimal treatments for people with primary immunodeficiency (PID) worldwide. Works as the global advocate for the PID patient community, in cooperation with its national member organisations and major PID stakeholders. Key campaigns: Supports ‘World Primary Immunodeficiencies (WPIW) Week’ (every April).

Members and memberships Number of member groups: 24 member organisations from 24 European countries. Countries of member groups: Austria, Belgium, Cyprus, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Spain, Sweden, Switzerland, Turkey, UK. Groups to which organisation is affiliated: European Organisation for Rare Diseases (EURORDIS); European Patients’ Forum (EPF). Current affiliations with the EU: Involved in the activities of the European Medicines Agency (EMA).

Reproductive and Sexual Health

International Planned Parenthood Federation European Network (IPPF EN) http://www.ippfen.org/en IPPF European Network 146 Rue Royale 1000 Brussels Belgium

150

European Patient Group Directory 2011–2012

T: +32-(2)-250-09-50 F: +32-(2)-250-09-69 Email: info@ippfen.org

Activities and campaigns Geographic areas of operation: Mainly Europe. Key activities: One of the six regions of the IPPF, a worldwide movement of national organisations working with, and for, communities and individuals. Aims to safeguard sexual and reproductive health and rights. Involved in advocacy, programme development and institution building. Key campaigns: Supports ‘International Women’s Day’ (every March). Objectives for 2012 onwards: “A lot of work is still to be done in Europe by IPPF EN because of the variances between countries and communities that exacerbate health and social inequalities.”

Main contact: Vicky Claeys Position of main contact: Regional Director Name of representative in Brussels: Vicky Claeys Position of representative in Brussels: Regional Director Contact for representative in Brussels: info@ippfen.org

Members and memberships Number of member groups: 31 member organisations from 30 European countries. Countries of member groups: Albania, Austria, Belgium (2), Bosnia, Bulgaria, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Latvia, Lithuania, Macedonia, Netherlands, Norway, Poland, Portugal, Romania, Slovakia, Spain, Sweden, Switzerland, Turkey, UK. Groups to which organisation is affiliated: European Public Health Alliance (EPHA); European NGO Confederation for Relief and Development (CONCORD); Platform of European Social NGOs (Social Platform). Current affiliations with the EU: Observer status with the Inter-European Parliamentary Forum on Population and Development (EPF). Revenue Most recent yearly revenue: €5.38m (2009). Main sources of funding: 2009: €3.16m from the parent body, the IPPF. €2.79m from other sources: Bill and Melinda Gates Foundation; European Commission; UK Department for International Development (DFID).

Genetic and Rare Diseases

International Pompe Association (IPA) http://worldpompe.org IPA Secretariat c/o Vereniging Spierziekten Nederland (VSN) Luitenant Generaal van Heutszlaan 6 3743 JN Baarn Netherlands

Main contact: Wilma Treur Position of main contact: Secretary General

T: +31-(35)-548-0480 F: +31-(35)-548-0499 Email: info@worldpompe.org

ÂŠ Burson-Marsteller/PatientView

European Patient Group Directory 2011â&#x20AC;&#x201C;2012

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Activities and campaigns Geographic areas of operation: Global, with a strong European presence. Key activities: Federation of Pompe disease patient groups. Seeks to coordinate activities, and share experience and knowledge between groups. Campaigns for early diagnosis, and effective, affordable, and safe therapies. Provides information and support to people with Pompe disease, and works closely with industry to stimulate research into the causes, treatment and prevention of Pompe disease.

Members and memberships Number of member groups: No member groups, but 12 affiliate organisations from 12 European countries. Countries of member groups: Austria, France, Germany, Greece, Italy, Netherlands, Norway, Poland, Spain, Switzerland, Turkey, UK. Groups to which organisation is affiliated: Patients Network for Medical Research and Health (EGAN).

Public Health

International Union for Health Promotion and Education/European Region (IUHPE/Euro) http://www.iuhpe.org/index.html?page=603&lang=en 42 Blvd. de la Libération 93203 St. Denis Cedex France

Main contact: Ursel Broesskamp-Stone Position of main contact: Vice President for Europe

T: +33-1-48-13-71-20 F: +33-1-48-09-17-67 Email: iuhpe@iuhpe.org

Members and memberships Number of member groups: Trustee, institutional, and individual members from across Europe. Current affiliations with the EU: Member of the DG SANCO EU Health Policy Forum (EUHPF).

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European Patient Group Directory 2011–2012

Revenue Pharmaceutical funding: None. Main sources of funding: The parent body (IUHPE); membership fees. Parent body’s main donor: French Health Directorate.

Activities and campaigns Geographic areas of operation: Europe. Key activities: European regional office of the International Union for Health Promotion and Education. Committed to improving health and wellbeing through education, community action, and the development of healthy public policy. Works to strengthen understanding and expertise in the area of health promotion, and lobbies policy- and decision-makers. Objectives for 2012 onwards: “IUPE/Euro will concentrate on health and quality of life, and health and solidarity, aiming to build partnerships across sectors to leverage resources in the current economic situation.” Current EU-funded projects: Partner in ‘Core Competencies Framework for Health Promotion Handbook (CompHP)’, 2009-2012, funded by the Executive Agency for Health and Consumers (EAHC).

Cancer

LeukaNET e.V. [Formerly Leukämie-Online e.V.] http://www.leuka.net Am Rothenanger 1b 85521 Riemerling Germany

Main contact: Jan Geissler Position of main contact: Chair

F: +49-89-6283-6808 Email: info@leukaemie-online.de

Members and memberships Number of members groups: Over 1,600 individual members. Countries of member groups: Austria, Germany, Luxembourg, Switzerland. Groups to which organisation is affiliated: CML Advocates Network; Deutsche Leukämie- und Lymphom-Hilfe (DLH); European Cancer Patient Coalition (ECPC).

European Patient Group Directory 2011–2012

Revenue Most recent yearly revenue: €30,000. Pharmaceutical funding: Bristol Myers Squibb; GSK; Novartis; Pfizer. Main sources of funding: Pharmaceutical companies; donations from the public.

153

Activities and campaigns Geographic areas of operation: German-speaking parts of Europe (Austria, Germany, Luxembourg, and Switzerland). Key activities: Online community for Germanspeaking patients with leukemia. Provides news and knowledge about progress in research and leukemia therapy, and a discussion forum. Members of the online community can ask questions, submit articles, and suggest books and web links.

Auto-Immune and Immune Diseases

Lupus Europe http://www.lupus-europe.org

8 Legge Lane Coseley West Midlands WV14 8RQ UK

Main contact: Yvonne Norton Position of main contact: Chair

T: +44-1902-49-82-36 Email: chair@lupus-europe.org

154

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: 22 member groups from 20 European countries. Countries of member groups: Belgium (2), Cyprus, Denmark, Finland, France (2), Germany, Hungary, Iceland, Ireland, Italy, Malta, Netherlands, Norway, Portugal, Romania, Slovenia, Spain, Sweden, Switzerland, UK. Groups to which organisation is affiliated: European Patients’ Forum (EPF).

Activities and campaigns Geographic areas of operation: Europe. Key activities: Umbrella association of national lupus self-help groups in Europe, representing around 30,000 patients. Aims to make lupus a well-known illness throughout Europe, and, in partnership with the medical profession, secure high-quality standards of treatment and support for people with lupus, their families and their carers. Key campaigns: Coordinates ‘World Lupus Day’ (every May). Objectives for 2012 onwards: “Lupus Europe plans to focus on raising awareness within key audiences about the work we do, and the impact of lupus on people with the condition.”

Revenue Most recent yearly revenue: Approximately €41,000 in 2010, according to GSK. Pharmaceutical funding: GSK points out that its 2010 donation of €7,000 represented 17% of the organisation’s revenue that year. Main sources of funding: Pharmaceutical company donations; fundraising activities; membership fees.

Cancer

Lymphoma Coalition (LC) http://www.lymphomacoalition.org c/o Global Lymphoma Coalition (GLC) 16-1375 Southdown Road, #228 Mississauga Ontario, L5H 4K3 Canada

Main contact: Karen Van Rassel Position of main contact: Executive Director

Revenue Most recent yearly revenue: Canadian $252,000/ approximately €184,000 (2010). Pharmaceutical funding: Allos Therapeutics Inc; EUSA Pharma; F. Hoffmann-La Roche (funds WLAD); Johnson & Johnson; Millennium Pharmaceuticals, Inc; Novartis; Takeda Oncology Company. GSK points out that its 2010 donation of €15,000 represented about 10% of the organisation’s revenue that year. Main sources of funding: Pharmaceutical companies.

155

Activities and campaigns Geographic areas of operation: Europe (and the rest of the world). Key activities: Global network of not-for-profit lymphoma patient organisations with a vision to free the world of lymphoma. Raises awareness of lymphomas, seeks to improve understanding of lymphomas, and works to ensure best practice management of lymphomas. Key campaigns: Runs ‘World Lymphoma Awareness Day (WLAD)’ (every September). Supports ‘World Cancer Day’ (every February). Objectives for 2012 onwards: “Projects in the next years will support our strategic direction: a global two-way e-resource centre for information on demographics, global surveys, treatment access, clinical trials, and research updates for member groups, partners, healthcare and research communities, and the media.”

Members and memberships Number of member groups: 26 member groups from 22 European countries. Countries of member groups: Belgium, Bulgaria, Croatia, Czech Republic, Denmark, France, Germany (2), Hungary, Ireland, Italy, Latvia, Lithuania, Netherlands (2), Poland, Serbia, Slovakia, Slovenia (2), Spain, Sweden, Switzerland, Turkey, UK (2). Groups to which organisation is affiliated: European Cancer Patient Coalition (ECPC); European Hematology Association (EHA); International Alliance of Patients’ Organizations (IAPO); Myeloma Euronet; Union for International Cancer Control (UICC). Current affiliations with the EU: Members attend the DG Research and Innovation Regional Issues Working Group.

European Patient Group Directory 2011–2012

T: 1-416-571-3103 Email: karen@lymphomacoalition.org

Mental Health

Mental Disability Advocacy Center (MDAC) http://www.mdac.info Hercegprímás u. 11. 1051 Budapest Hungary

Main contact: Oliver Lewis Position of main contact: Executive Director

T: +36-1-413-27-30 F: +36-1-413-27-39 Email: mdac@mdac.info

156

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: No member organisations. Groups to which organisation is affiliated: None.

Activities and campaigns Geographic areas of operation: Europe (and Central Asia). Key activities: International human rights organisation that advances the human rights of children and adults with an intellectual or psycho-social disability. Uses a combination of law and advocacy to promote equality and social inclusion. Conducts workshops on the discrimination and stigma experienced by people with depression.

Revenue Most recent yearly revenue: €870,000 (2010). Pharmaceutical funding: MDAC notes that it does not accept funding from pharmaceutical companies. Main sources of funding: 2010: Civil Rights Defenders; Ökotárs Foundation; Open Society Institute (OSI); Sigrid Rausing Trust; UK Foreign and Commonwealth Office; Zennstrom Philanthropies.

Mental Health

Mental Health Europe (MHE) http://www.mhe-sme.org

Activities and campaigns Geographic areas of operation: Europe. Key activities: NGO that promotes positive mental health and wellbeing, the prevention of mental distress, the improvement of care, advocacy, and the protection of the human rights of users and ex-users of mental health services (and their families and carers). Represents associations, organisations and individuals active in the field of mental health and wellbeing in Europe. Key campaigns: Runs ‘Make Steps Towards Social Inclusion’. Supports ‘European Year of Volunteering 2011, and ‘World Human Rights Day (every December). Objectives for 2012 onwards: “MHE’s overall goal is to develop and strengthen MHE’s capacities, and those of its member organisations (including people with a mental health problem).”

Members and memberships Number of member groups: 80 member organisations from 33 European countries. Countries of member groups: Austria, Belgium (12), Bulgaria, Croatia (2), Cyprus, Czech Republic (2), Denmark (3), Estonia, Finland (3), France (3), Germany (4), Greece (3), Hungary (2), Iceland, Ireland, Italy, Kosovo, Latvia, Lithuania, Luxembourg, Malta, Netherlands (5), Norway, Poland (3), Portugal (2), Romania (2), Serbia, Slovakia (3), Slovenia (2), Spain (5), Sweden, Switzerland, UK (8). Groups to which organisation is affiliated: European Coalition for Community Living (ECCL); European Disability Forum (EDF); European Patients’ Forum (EPF); European Public Health Alliance (EPHA); European Women’s Lobby (EWL); Platform of European Social NGOs (Social Platform). Current affiliations with the EU: Member of the DG SANCO EU Health Policy Forum (EUHPF). Revenue Most recent yearly revenue: €632,000 (2009). Pharmaceutical funding: None. Main sources of funding: 2010: DG Employment, Social Affairs and Inclusion’s PROGRESS Programme for Employment and Social Solidarity (2007-2013) (80% of annual revenue); membership fees (8%); donations from individuals. No corporate donations in 2010.

European Patient Group Directory 2011–2012

T: +32-2-280-04-68 F: +32-2-280-16-04 Email: info@mhe-sme.org

Main contact: Mary Van Dievel Position of main contact: Director Name of representative in Brussels: Mary Van Dievel Position of representative in Brussels: Director Contact for representative in Brussels: mvandievel@mhe-sme.org

157

Boulevard Clovis 7 1000 Brussels Belgium

Cancer

Myeloma Euronet (ME) http://www.myeloma-euronet.org Falltorweg 6 65428 Rüsselsheim Germany

158

European Patient Group Directory 2011–2012

T: +49-(0)6142-3-21-23 F: +49-(0)6142-30-11-85 Email: info@myeloma-euronet.org

Activities and campaigns Geographic areas of operation: Europe. Key activities: Non-profit network organisation of multiple myeloma patient groups dedicated to raising awareness of multiple myeloma. Provides information on diagnosis, treatment and care of people living with multiple myeloma, and supports member organisations’ missions. Scheduled to merge with the European Myeloma Platform (EMP) at about the time of publication of this Directory. Key campaigns: Runs ‘Early Myeloma Diagnosis Awareness’, and the ‘Multiple Myeloma Manifesto’. Supports ‘European Patients’ Rights Day’ (every April). Objectives for 2012 onwards: “ME will be providing multi-lingual information on appropriate diagnosis, treatment, and care; advocating the cause of myeloma patients and their needs among EU healthcare policy makers; and building partnerships among ME members.”

Main contact: Anita Waldmann Position of main contact: President Name of representative in Brussels: European Cancer Patient Coalition (ECPC) acts as Brussels representative.

Members and memberships Number of member groups: 36 member organisations from 18 European countries. Countries of member groups: Austria, Croatia (2), Cyprus, Czech Republic (2), Germany (10), Greece, Latvia, Lithuania, Portugal, Romania (3), Serbia (2), Slovakia, Slovenia, Spain (2), Sweden, Switzerland, Turkey (2), UK (3). Groups to which organisation is affiliated: European Cancer Patient Coalition (ECPC); European CanCer Organisation (ECCO); European Organisation for Rare Diseases (EURORDIS); Lymphoma Coalition (LC). Current affiliations with the EU: Involved in the activities of the European Medicines Agency (EMA). Revenue Most recent yearly revenue: €255,000 (2010). Pharmaceutical funding: Amgen; Celgene GmbH; Celgene International Sàrl; Genzyme; Janssen-Cilag GmbH; Novartis Pharma; Ortho Biotech; Roche Pharma. Main sources of funding: Pharmaceutical companies; donations; speaker honoraria and reimbursements.

Mental Health

National Suicide Bereavement Support Network (NSBSN) http://www.nsbsn.org/europeandirectory.htm Community Hall Main Street Killeagh County Cork Ireland

Main contact: Theresa Millea Position of main contact: Chairperson

T: +353-(0)24-95-561 F: +353-(0)87-987-7619 Email: info@nsbsn.org

ÂŠ Burson-Marsteller/PatientView

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Activities and campaigns Geographic areas of operation: Europe. Key activities: Network detailing the facilities in European countries that are available to help people who have been bereaved by suicide. Provides information and contact details about the support groups in each country, including whether the groups offer services for free, and if their membership is open or closed.

European Patient Group Directory 2011â&#x20AC;&#x201C;2012

Members and memberships Number of member groups: 194 support groups and associated facilities from 16 European countries. Countries of member groups: Austria (8), Belgium (18), Denmark, Estonia, Finland, France (10), Germany (23), Ireland (53), Lithuania, Netherlands (21), Norway (14), Slovenia, Sweden (28), Switzerland (9), Turkey, UK (4).

Genetic and Rare Diseases

ORPHANET http://www.orpha.net

INSERM SC11 96 rue Didot 75014 Paris France

Main contact: Prof Dr Ségolène Aymé Position of main contact: Director

160

European Patient Group Directory 2011–2012

T: +33-(0)1-56-53-81-37 F: +33-(0)1-56-53-81-38 Email: contact.orphanet@inserm.fr

Activities and campaigns Geographic areas of operation: Europe. Key activities: Free-of-charge, searchable-bydisease-name database dedicated to information on rare diseases and orphan drugs. Supplies patients and others with information about rare diseases, specialist outpatient clinics, clinical laboratories, research projects, patient support groups, and relevant websites. Collects data from 32 European countries. Not a patient group, but included in this Directory because of its value to patients. Current EU-funded projects: Partner in ‘TREATNMD’, 2007-2011, funded by the 6th Framework Programme.

Members and memberships Number of member groups: No members; run by a consortium of partners (one from 32 European countries). Countries of member groups: Austria, Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Luxembourg, Malta, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK. Groups to which organisation is affiliated: None. Current affiliations with the EU: Leads, and provides the scientific secretariat for, the DG SANCO EU Committee of Experts on Rare Diseases. Revenue Pharmaceutical funding: Alexion Pharmaceuticals Inc; AVI BioPharma; Les Entreprises du Médicament (LEEM); GSK; Pfizer. Main sources of funding: Association Française contre les Myopathies (AFM); Caisse Nationale de Solidarité pour l’Autonomie (CNSA); DG SANCO and DG Research and Innovation; Fondation Groupama pour la Santé; Institut National de la Santé et de la Recherche Médicale (INSERM); Ministère du Travail, de l’Emploi et de la Santé Français.

Genetic and Rare Diseases

Osteogenesis Imperfecta Federation Europe (OIFE) http://www.oife.org Sturzstraße 17 96049 Bamberg Germany

Main contact: Ute Wallentin Position of main contact: President

T: +49-951-60-3316 Email: office@oife.org

European Patient Group Directory 2011–2012

Revenue Main sources of funding: Annual membership fees.

161

Activities and campaigns Geographic areas of operation: Europe (plus international associate members). Key activities: Represents people with osteogenesis imperfecta (OI, brittle bone disease), supports OI families and OI groups, and networks between OI patients and professionals. Represent the interests of members at a European level, and collects, publishes and exchanges information on OI. Objectives for 2012 onwards: “OIFE will be looking at psychological issues in OI, working on organising an international meeting for OI adults, and will produce a proposal about studying the relationship between heart disease and OI.”

Members and memberships Number of member groups: 18 member organisations from 15 European countries. Countries of member groups: Belgium (2), Croatia, Denmark, Finland, France, Germany, Italy, Netherlands (2), Norway, Poland, Portugal, Spain (2), Sweden, Switzerland, UK. Groups to which organisation is affiliated: European Organisation for Rare Diseases (EURORDIS).

Genetic and Rare Diseases

Patients Network for Medical Research and Health (EGAN) [Formerly European Genetic Alliances’ Network] http://www.egan.eu c/o VSOP (Dutch Genetic Alliance) Koninginnelaan 23 3762 DA Soest Netherlands

Main contact: Dr Cor Oosterwijk Position of main contact: Secretary General

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European Patient Group Directory 2011–2012

T: +31-(0)35-603-4040 F: +31-(0)35-602-7440 Email: egan@egan.eu

Activities and campaigns Geographic areas of operation: Europe. Key activities: Network of national genetic alliances and European disease-specific patient groups with a special interest in genetics, genomics, and biotechnology. Works for a patient voice in research and health policy. Articulates a patient-focused perspective on genetic and medical biotechnological issues, and on their ethical, legal, psychosocial and cultural implications in the European political, scientific and industrial arena. Key campaigns: Supports ‘Rare Disease Day’ (every February). Current EU-funded projects: Partner in two projects funded by the 7th Framework Programme: ‘Genetic and Epigentic Networks in Cognitive Dysfunction (GENCODYS)’, 2010-2015; and ‘Global Research in Paediatrics (GRIP)’, 2011-2015.

Members and memberships Number of member groups: 13 European organisations, 1 regional alliance (Eastern Europe), and 4 national organisations. Countries of member groups: National organisations from the Netherlands, Sweden, UK (2). Groups to which organisation is affiliated: European Patients’ Forum (EPF); European Platform for Patients’ Organisations, Science and Industry (EPPOSI); International Genetic Alliance of Parent and Patient organisations (IGA). Current affiliations with the EU: Involved in the activities of the European Medicines Agency (EMA). Revenue Pharmaceutical funding: Amgen; Genzyme; Novartis; Roche. Main sources of funding: European Commission; pharmaceutical companies; Netherlands Organisation for Health Research and Developmen (ZonMw).

Public Health

Pesticide Action Network Europe (PAN Europe) http://www.pan-europe.info

Activities and campaigns Geographic areas of operation: Europe. Key activities: Network of grassroots consumer, public health, and environmental organisations working to replace the use of hazardous pesticides with ecologically-sound alternatives. Serves as a focal point for NGO advocacy and public participation in EU pesticide policy, and orchestrates independent food-testing initiatives to inform consumers. Objectives for 2012 onwards: “As Europe’s pesticide-approval process has yet to tackle concerns like endocrine disruption and increased sensitivity among children and foetuses, PAN Europe is joining forces with everybody willing to help us win the argument for integrated agricultural production.”

Members and memberships Number of member groups: 28 member organisations from 16 European countries. Countries of member groups: Austria (2), Belgium (3), Bulgaria (2), Denmark (2), France, Germany (2), Hungary (2), Ireland, Italy, Macedonia, Netherlands (4), Poland (2), Slovakia, Slovenia, Sweden, UK (2). Groups to which organisation is affiliated: Health and Environment Alliance (HEAL). Current affiliations with the EU: Member of the DG SANCO Advisory Group on the Food Chain, Animal and Plant Health. Member of the DG Environment Advisory Group on Biocides. Member of the DG Agriculture Advisory Group on Organic Farming. Revenue Most recent yearly revenue: £164,000/ approximately €186,000 (2010). Pharmaceutical funding: PAN Europe states that it does not accept donations from private companies, but may consider doing so in the future. Main sources of funding: 2010: European Commission (£67,000/€76,000); Ecology Trust (£51,000/€58,000); Sigrid Rausing Trust (£45,000/€51,000).

European Patient Group Directory 2011–2012

T: +32-2-503-08-37 F: +32-2-402-30-42 Email: henriette@pan-europe.info

Main contact: Henriette Christensen Position of main contact: Policy Advisor Name of representative in Brussels: Henriette Christensen Position of representative in Brussels: Policy Advisor Contact for representative in Brussels: henriette@pan-europe.info

163

Rue de la Pépinière, 1 1000 Brussels Belgium

Civic and Consumer with Interest in Healthcare

Platform of European Social NGOs (Social Platform) http://www.socialplatform.org Square de Meeûs 18 1050 Brussels Belgium T: +32-(0)2-511-37-14 F: +32-(0)2-511-19-09 Email: platform@socialplatform.org

Main contact: Pierre Baussand Position of main contact: Director Name of representative in Brussels: Pierre Baussand Position of representative in Brussels: Director Contact for representative in Brussels: pierre.baussand@socialplatform.org

164

European Patient Group Directory 2011–2012

Members and memberships Number of member groups: 42 member Europewide or international NGOs (many healthoriented). Groups to which organisation is affiliated: EU Civil Society Contact Group; Spring Alliance. Current affiliations with the EU: Participation in many European Commission working groups.

Activities and campaigns Geographic areas of operation: Europe. Key activities: Brings together European non-governmental organisations, federations and networks working to build an inclusive society and to promote the social dimension of the European Union. Member organisations’ specialties include health, reproductive rights, women, people with a disability, older people, and young people, children and families. Key campaigns: Supports ‘2012 European Year of Intergenerational Solidarity’. Objectives for 2012 onwards: “For 2012 and beyond, Social Platform will concentrate on advocacy work on common recommendations on how to build a caring society, and to enhance the quality of health and social services. Our long-term objective is for EU institutions to invest in care infrastructure and social protection systems.”

Revenue Most recent yearly revenue: €859,000 (2009), according to the Register of the European Transparency Initiative (ETI). Main sources of funding: 2009: European Commission (€677,000); membership fees; project funding.

Infectious

Polio Initiative Europa e.V. (PIE) http://www.polio-initiative-europa.de Lindenweg 8 92507 Nabburg Germany

Main contact: Dieter Schlegel Position of main contact: Chairperson

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Activities and campaigns Geographic areas of operation: Europe. Key activities: Represents the interests of people with this viral infection. Collates information about scientific work on poliomyelitis, making it more widely available, including to patients. Members provide each other with mutual support.

European Patient Group Directory 2011â&#x20AC;&#x201C;2012

T: +49-(0)94-33-407 F: +49-(0)94-33-407 Email: karin.schlegel@gmx.net

Cancer

Rare Cancers Europe (RCE) [Formerly European Action Against Rare Cancers; EAARC] http://www.rarecancers.eu Robert Schaefer, Rare Cancers Europe c/o European Society for Medical Oncology (ESMO) Brunnenstrasse 178/179 10119 Berlin Germany

Email: schaefer.robert@esmo.org Main contact: Robert Schaefer Position of main contact: Senior Project Manager

T: +49-30-2887-9755 F: +49-30-2887-9766

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Members and memberships Number of member groups: 19 Europe-wide umbrella groups. Groups to which organisation is affiliated: European Society for Medical Oncology (ESMO).

Activities and campaigns Geographic areas of operation: Europe. Key activities: Multi-stakeholder initiative that brings together professional societies, cancer and rare disease associations, rare cancer networks, and reference centres, patient advocacy groups, and the industry, all working together to put rare cancers on the European policy agenda, and to implement 39 political recommendations addressing issues of particular relevance in rare cancers. Key campaigns: Runs ‘Call to Action’. Objectives for 2012 onwards: “The RCE’s goals are: improved methodology of clinical studies in rare cancers; better-organised healthcare for people with a rare cancer; and greater access to new therapies for rare cancer patients across the EU.”

Revenue Most recent yearly revenue: €160,000 (2011). Pharmaceutical funding: 2011: Novartis Oncology (€55,000); Pfizer Oncology (€50,000); PharmaMar (€5,000); Sanofi-Aventis (€50,000). Main sources of funding: Industry.

Disability

Retina International http://www.retina-international.org

Ausstellungstraße 36 8005 Zürich Switzerland

Main contact: Christina Fasser Position of main contact: President

T: +41-44-444-10-77 F: +41-44-444-10-70 Email: christina.fasser@retina-international.org

European Patient Group Directory 2011–2012

Revenue Most recent yearly revenue: €70,000. Pharmaceutical funding: None. Main sources of funding: Membership fees.

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Activities and campaigns Geographic areas of operation: International. Key activities: Voluntary, charitable, umbrella association of national societies that seek a cure for retina pigmentosa, macular degeneration, Usher syndrome, and allied retinal dystrophies. Promotes the search for treatments, provides information, encourages public awareness, and seeks the foundation of new member societies. Key campaigns: Supports ‘Rare Disease Day’ (every February) and ‘World Retina Week’ (every September). Objectives for 2012 onwards: “Retina International intends to promote translational research.” Current EU-funded projects: Partner in ‘Visual Impairment and Degeneration: a RoadMap for Vision Research within Europe (EuroVisionNet)’, 2008-2012, funded by DG Research and Innovation under the 7th Framework Programme.

Members and memberships Number of member groups: 17 member associations from 17 European countries. Countries of member groups: Denmark, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Lithuania, Netherlands, Norway, Portugal, Spain, Sweden, Switzerland, UK. Groups to which organisation is affiliated: AMD (Age-Related Macular Degeneration) Alliance International; European Disability Forum (EDF); European Federation of Neurological Associations (EFNA); European Patients’ Forum (EPF); European Platform for Patients’ Organisations, Science and Industry (EPPOSI); Patients Network for Medical Research and Health (EGAN).

Genetic and Rare Diseases

Rett Syndrome Europe (RSE) http://www.rettsyndrome.eu c/o Rett UK Langham House West Mill Street Luton Bedfordshire, LU1 2NA UK

Email: postmaster@rettsyndrome.eu / y.m@ cmail.co.uk Main contact: Yvonne Milne Position of main contact: President

T: +44-(0)1582-798-910

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Activities and campaigns Geographic areas of operation: Europe. Key activities: Non-profitmaking organisation that represents the interests of Europeans with Rett syndrome (and their families). Publicises Rett syndrome to the public, professionals, carers, and to all concerned in European countries, promotes research into Rett syndrome, and disseminates information about the disorder and about support for families and carers. Members and memberships Number of member groups: 22 member organisations from 20 European countries. Countries of member groups: Austria, Belgium, Croatia, Czech Republic, Denmark, France, Germany, Hungary, Ireland, Italy (2), Netherlands, Norway, Poland, Portugal, Serbia, Spain (2), Sweden, Switzerland, Turkey, UK. Current affiliations with the EU: Involved in the activities of the European Medicines Agency (EMA). Revenue Main sources of funding: Membership fees.

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Palliative

Right to Die Europe (RtD-E) http://www.rtde.eu RtD-Europe Secretariat c/o Dignity in Dying (DID) 181 Oxford Street London W1D 2JT UK

Main contact: Karen Sanders Position of main contact: President

T: +31-(0)20-620-0690 Email: secretariat@rtde.eu

Members and memberships Number of member groups: 20 member societies from 14 European countries. Countries of member groups: Belgium, Denmark, Finland, France, Germany, Ireland, Italy (2), Luxembourg, Netherlands (3), Norway, Spain, Sweden, Switzerland (3), UK (2). Groups to which organisation is affiliated: World Federation of Right to Die Societies (WFRtDS).

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European Patient Group Directory 2011â&#x20AC;&#x201C;2012

Revenue Main sources of funding: World Federation of Right to Die Societies (WFRtDS); member societies.

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Activities and campaigns Geographic areas of operation: Europe. Key activities: Umbrella organisation of European societies working to secure or protect the rights of individuals to self-determination at the end of their lives. Promotes co-operation and liaison among member societies.

Cancer

Sarcoma Patients EuroNet Association (SPAEN) http://www.sarcoma-patients.eu M. Geissler (Project Manager) SPAEN Administrative Office Am Rothenanger 1b 85521 Riemerling Germany

Main contact: Markus Wartenberg Position of main contact: Financial Director

T: +49-6032-9492-438 / +49-89-6283-6807 F: +49-89-6283-6808 Email: info@sarcoma-patients.eu

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European Patient Group Directory 2011–2012

Members and memberships Number of member groups: 17 member organisations from 11 European countries. Countries of member groups: Finland, France (3), Germany (2), Italy (2), Macedonia, Netherlands, Poland (2), Romania, Sweden, Switzerland, UK (2). Groups to which organisation is affiliated: European Cancer Patient Coalition (ECPC).

Activities and campaigns Geographic areas of operation: Europe (and worldwide). Key activities: European network of sarcoma patient advocacy groups. Raises awareness of sarcomas (including desmoids and GIST) among the public and healthcare stakeholders, works to optimise a pan-European flow of information between members, strengthens existing member organisations and new patient groups, and aims to see improvements in the quality of treatment and research for the benefit of sarcoma patients across the whole of Europe. Membership is open to patient groups across Europe working with sarcoma patients. Objectives for 2012 onwards: “Partnering with clinicians, researchers, industry and other stakeholders, SPAEN aims to improve the treatment and care of sarcoma patients in Europe. SPAEN: ‘A Better Future For Patients With A Rare Cancer’.”

Revenue Most recent yearly revenue: €95,000 (2010). Pharmaceutical funding: Bayer; MSD/Merck; Novartis; Pfizer; PharmaMar; Takeda (all totalling €95,000). Main sources of funding: Pharmaceutical companies; membership fees.

Neurological Conditions

SMA Europe http://www.sma-europe.net

Im Moos 4 79112 Freiburg im Breisgau Germany T: +49-766-59-44-70 Email: sma-europe@afm.genethon.fr / info@ initiative-sma.de

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Activities and campaigns Geographic areas of operation: Europe and the USA. Key activities: Alliance of seven of the leading European spinal muscular atrophy (SMA) patient groups and research charities dedicated to finding a cure for SMA. Aims to act as an information-sharing and grant-giving platform for the European SMA community.

European Patient Group Directory 2011â&#x20AC;&#x201C;2012

Members and memberships Number of member groups: 7 member associations from 6 European countries. Countries of member groups: France, Germany, Italy, Netherlands, Spain, UK (2). Groups to which organisation is affiliated: European Organisation for Rare Diseases (EURORDIS).

Public Health

Smokefree Partnership (SFP) http://www.smokefreepartnership.eu c/o European Respiratory Society 49-51 rue de Treves 1040 Brussels Belgium T: +32-2-238-53-60 F: +32-2-238-53-61 Email: smokefree.partnership@ersnet.org

Main contact: Florence Berteletti Kemp Position of main contact: Director Name of representative in Brussels: Florence Berteletti Kemp Position of representative in Brussels: Director Contact for representative in Brussels: florence.berteletti@ersnet.org

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Members and memberships Number of member groups: 3 partner organisations (2 of which are NGOs) in two European countries. Countries of member groups: Belgium, UK. Current affiliations with the EU: Member of the DG SANCO EU Health Policy Forum (EUHPF).

Activities and campaigns Geographic areas of operation: Europe. Key activities: Partnership between four organisations with a mission to see the implementation of the WHO Framework Convention on Tobacco Control (FCTC). Works to ensure that tobacco control receives political attention at EU level, and promotes tobaccocontrol information and policy research at EU and national levels. Key campaigns: Member of the consortium of the ‘Tobacco-Free Europe’ campaign. Supports ‘World No Tobacco Day’ (every May). Objectives for 2012 onwards: “SFP will continue to contribute to the implementation of the Framework Convention on Tobacco Control (FCTC), to exposure of the tobacco industry, and towards action against the illicit trade of tobacco products.” Current EU-funded projects: Lead partner in ‘TobTaxy (Making Tobacco Tax Trendy)’, 20102013, funded by the Health Programme 20082013 of the Executive Agency for Health and Consumers (EAHC).

Revenue Most recent yearly revenue: €373,000 (2010). Pharmaceutical funding: 2010: Novartis (€5,000). Johnson & Johnson, Novartis, and Pfizer supply unrestricted educational grants to consortium members of the ‘Tobacco-Free Europe’ campaign. Main sources of funding: 2010: core funding from 3 members (€154,000); project funding mainly from the European Commission (€214,000).

Disability

Social Firms Europe CEFEC http://www.socialfirmseurope.org

Activities and campaigns Geographic areas of operation: Europe. Key activities: European network of social firms, social co-operatives, NGOs and organisations that share the aim of creating employment for people with a disability. An annual conference brings together users of mental health services, members, mental health professionals and managers. Objectives for 2012 onwards: “CEFEC plans to increase the membership, serve it, and become more financially sustainable and influential as a European network.”

Members and memberships Number of member groups: Member organisations in 17 European countries. Countries of member groups: Austria, Belgium, Bulgaria, Cyprus, Czech Republic, Denmark, Finland, Germany, Gibraltar, Greece, Italy, Portugal, Romania, Slovenia, Spain, Switzerland, UK. Groups to which organisation is affiliated: European Disability Forum (EDF); Mental Health Europe (MHE). Revenue Most recent yearly revenue: €11,000 (2010). Main sources of funding: Membership fees; donations.

European Patient Group Directory 2011–2012

T: +44-(0)-1737-231-366 F: +44-(0)-1737-826-658 Email: socialfirmseurope@cefec.biz

Main contact: Tom Gaule Position of main contact: Secretariat Name of representative in Brussels: Bernard Jacob Position of representative in Brussels: Administrateur Stratégique UTE-AIGS Contact for representative in Brussels: bernard.jacob@aigs.be

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Suite 2 Victoria House 10 Brighton Road Redhill Surrey, RH1 6QZ, UK

Heart and Circulatory Diseases

Stroke Alliance for Europe (SAFE) http://www.safestroke.com SAFE Secretariat c/o Stroke House 240 City Road London EC1V 2PR, UK

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T: +44-(0)207-566-0310 F: +44-(0)207-490-2686 Email: mail@safestroke.com

Activities and campaigns Geographic areas of operation: Europe. Key activities: Supports stroke patient organisations across Europe, promotes prevention and research into stroke, and aims to advance the priority given to stroke and to stroke patients. Aims to influence legislation at European Parliament level on behalf of resources to improve stroke prevention and care across Europe. Key campaigns: Runs ‘European Stroke Awareness Day’ (every May). Supports ‘World Stroke Day’ (every October). Objectives for 2012 onwards: “SAFE represents a strong patient and carer voice which will call on European governments to take the lead in making stroke prevention a health priority.” Current EU-funded projects: Partner in ‘European Stroke Research Network (EUSTROKE)’, 20082013, funded by the 7th Framework Programme.

Main contact: Markus Wagner Position of main contact: President Name of representative in Brussels: Willy Devriesere Position of representative in Brussels: SAFE Board Member Contact for representative in Brussels: willy.devriesere@skynet.be

Members and memberships Number of member groups: 21 member organisations from 17 European countries Countries of member groups: Austria, Belgium, Czech Republic, Denmark, Finland, France, Germany, Hungary, Iceland, Italy, Netherlands, Norway (2), Poland, Slovenia, Spain (2), Sweden, UK (3). Groups to which organisation is affiliated: European Federation of Neurological Associations (EFNA). Revenue Pharmaceutical funding: AstraZeneca; MSD; Sanofi-Aventis. Main sources of funding: Pharmaceutical companies; medical device companies; subscriptions from supporting organisations.

Blood Disorders

Thalassaemia International Federation (TIF) http://www.thalassaemia.org.cy PO Box 28807 2083 Nicosia Cyprus

Main contact: Dr Androulla Eleftheriou Position of main contact: Executive Director

Revenue Most recent yearly revenue: €986,000 (2010). Pharmaceutical funding: 2009: ApoPharma; Novartis Oncology. Main sources of funding: 2009: pharmaceutical companies; medical device companies; local non-medical businesses; Cyprus government departments; Executive Agency for Health and Consumers (EAHC) (€70,000).

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Activities and campaigns Geographic areas of operation: Europe (and worldwide). Key activities: Umbrella organisation of national thalassaemia associations. Supports the development and implementation of effective control programmes, and the establishment of educational programmes, including the training of health professionals and the distribution of educational materials. Key campaigns: Runs ‘World Thalassaemia Day’ (every May). Supports ‘World Blood Donor Day’ (every June). Objectives for 2012 onwards: “TIF will focus on three areas: creation of global networks of experts and patients; promotion of haemoglobinopathies on national and European health agendas; and placing thalassaemia and other Hb disorders in the wider context of rare diseases.”

Members and memberships Number of member groups: 30 member organisations from 16 European countries. Countries of member groups: Albania, Belgium, Bulgaria (2), Cyprus, France, Germany (2), Greece (2), Italy (7), Luxembourg, Malta, Netherlands, Portugal, Romania, Spain, Turkey (4), UK (3). Groups to which organisation is affiliated: European Organisation for Rare Diseases (EURORDIS); European Platform for Patients’ Organizations, Science and Industry (EPPOSI); European Public Health Alliance (EPHA); International Alliance of Patients’ Organizations (IAPO). Current affiliations with the EU: Involved in the activities of the European Medicines Agency (EMA).

European Patient Group Directory 2011–2012

T: +357-22-319-129 F: +357-22-314-552 Email: thalassaemia@cytanet.com.cy

Urinary

World Federation of Incontinent Patients (WFIP) http://www.wfip.org Viale Orazio Flacco 24 70124 Bari Italy

Main contact: Nancy Muller Position of main contact: Secretary

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T: +39-(0)80-509-3389 / +1-843-377-0900, ext207 F: +39-(0)80-561-9181 / +1-843-377-0905 Email: nafc@wfip.org

Activities and campaigns Geographic areas of operation: Mainly Europe. Key activities: Patient-centred non-profit association for people suffering from incontinence and related pelvic-floor disorders, and their respective national associations. Provides member associations with up-todate information, guidelines and educational resources. Seeks international cooperation via lobbying and contact with official bodies and relevant patient advocacy groups. Key campaigns: WFIP ‘Bill of Patient Rights’. Objectives for 2012 onwards: “WFIP is launching a mentoring programme to foster new organisations in countries that lack a patient advocacy group dedicated to improving the lives of people living with incontinence.”

Members and memberships Number of member groups: 12 European member associations from 12 European countries. Countries of member groups: Czech Republic, Denmark, France, Italy, Malta, Netherlands, Poland, Portugal, Romania, Spain, Sweden, UK. Groups to which organisation is affiliated: European Platform for Patients’ Organizations, Science and Industry (EPPOSI); International Alliance of Patients’Organizations (IAPO); Continence Promotion Committee (CPC) of the International Continence Society (ICS).

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