EU Patient directory by Burson-Marsteller EMEA

European Patient Group Drectory, 3rd edition, 2009-2010

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Author:

Burson-Marsteller 37 Square de Meeûs B-1000 Brussels Belgium Tel: 0032-(0)2-743-66-11 email: david.earnshaw@bm.com http://www.bmbrussels.eu

PatientView Woodhouse Place Upper Woodhouse Knighton, Powys LD7 1NG UK Tel: 0044-(0)1547-520-965 email: info@patient-view.com http://www.patient-view.com

Media Partner: European Health Forum Gastein Ignaz-Harrer-Straße 77 5020 Salzburg Austria Tel: 0043-(0)-662-422-400 email: info@ehfg.org http://www.ehfg.org

Copyright © Burson-Marsteller / PatientView 2009-2010 Any part of this document may be used for non-commercial purposes, as long as the source is acknowledged. For any queries regarding reproduction of this publication, please contact either Burson-Marsteller or PatientView. Use in a library Should you be using this Directory in a library, please note that it remains protected by copyright. All restrictions imposed on the use of this Directory continue to apply. Limited liability The author and publisher of this Directory (and their agents) offer no warranty as to the accuracy or suitability of this publication for any purpose. Although due care has been given to ensuring the validity of the data published in this Directory, the author and publisher can accept no responsibility or liability for any losses or damages of any kind, however so arising from actions taken, or based upon, the contents of this publication. The author and publisher reserve the right to change the design, contents, and layout of the Directory, should they consider this action appropriate. EUROPEAN PATIENT GROUP DIRECTORY, 2009-2010 © BURSON-MARSTELLER / PATIENTVIEW

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European Patient Group Drectory, 3rd edition, 2009-2010

Contents FOREWORD FROM ROBERT MADELIN

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INDEX PAGES

A6-A26

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

PAGES A28

KEY TO DATA

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ENTRIES (IN ALPHABETICAL ORDER)

PAGES 1-186

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Foreword

FOREWORD

By Robert Madelin European Commission Director General for Health and Consumers

I know that the latest edition of this Directory will be studied attentively by many actors, activists and commentators across the European Union and beyond. In the health policy field as elsewhere, European decision makers are devoting increasing attention to the accurate mapping of our stakeholders, and any organisation calling itself a "patient group" clearly has a claim to be a stakeholder for health-related issues within EU policy debate. At the same time, the Commission as a whole is committed to ensuring that all stakeholders have a clear idea of who else is at the table: what are the purposes, governance and funding of each stakeholder organisation? On the financial side, it is clear that there remains a debate across Europe concerning the legitimacy of public policy interventions made by organisations which enjoy subsidy from economic operators. The minimum standard here, it seems to me, is full transparency: to know not only who funds an EU umbrella group, for example, but who funds the national or local level organisations whose fees in turn contribute to those umbrella activities.

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Foreword I have challenged the producers of this Directory in the past to give more funding information, and I welcome the improvements in this respect in the current edition. I am sure that even more transparency will come by the time of the 4th edition, because it will become increasingly evident to those who wish to take part in policy debate that it is in their own interest to be fully transparent about governance and funding. Openness can only raise the legitimacy both of each stakeholder, and of stakeholder consultation, as contributions to good EU policy making. Robert Madelin European Commission Director General for Health and Consumers Brussels, 20 August 2009

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Indexes / A-Z List of specialisations

Indexes 186 PAN-EUROPEAN PATIENT, CARERS’, CHILDREN’S, CONSUMER, DISABILITY, OLDER PEOPLE’S, AND OTHER GROUPS WITH AN INTEREST IN SOME ELEMENT OF HEALTH ADVOCACY A-Z LIST OF SPECIALISATIONS A-Z LIST OF ENTRIES A-Z LIST OF ACRONYMS

A-Z List of Specialisations 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.

ADDICTION Correlation, Page 24. Eurocare, Page 33. Euro-Methwork, Page 36. Europe Against Drugs (EURAD), Page 41.

ARTHRITIS European League Against Rheumatism (EULAR), Page 96. European Network for Children with Arthritis (ENCA), Page 103.

AUTO IMMUNE / IMMUNE DISEASES Federation of European Scleroderma Associations (FESCA), Page 134. Lupus Europe, Page 164. Coeliac Youth of Europe (CYE), Page 20. European Association of Patients Organizations of Sarcoidosis and other Granulomatous Disorders (EPOS), Page 49. International Patient Organisation for Primary Immunodeficiencies (IPOPI), Page 159.

BLOOD DISORDERS AntiCoagulation Europe (ACE), Page 7. European Federation of Associations of Patients with Haemochromatosis (EFAPH), Page 74. European Haemophilia Consortium (EHC), Page 88. Thalassaemia International Federation (TIF), Page 184.

BONE European Osteoporosis League (EOL), Page 114. International Osteoporosis Foundation (IOF), Page 158.

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CANCER Association of European Cancer Leagues (ECL), Page 10. CML Advocates Network, Page 19. CONTICANET, Page 23. Das Lebenshaus, Page 26. EUROPA DONNA—the European Breast Cancer Coalition (ED), Page 38. Europa Uomo (EUROMO), Page 39. Europacolon, Page 40. European CanCer Organisation (ECCO), Page 54. European Cancer Patient Coalition (ECPC), Page 55. European Cervical Cancer Association (ECCA), Page 56. European Myeloma Platform (EMP), Page 102. Global Lung Cancer Coalition (GLCC), Page 140. International Brain Tumour Alliance (IBTA), Page 155. Leukämie-Online, Page 163. Lymphoma Coalition, Page 165. Myeloma Euronet (ME), Page 168. Sarcoma Patients EuroNet Association (SPAEN), Page 179. Global Gist-Network (GGN), Page 139.

CARERS Eurocarers, Page 34. European Association of Service Providers for Persons with Disabilities (EASPD), Page 50. European Federation of Unpaid Parents and Carers at Home (FEFAF), Page 85.

CHILDREN Eurochild, Page 35. European Association for Children in Hospital (EACH), Page 46. European Federation of Parents of Hearing-Impaired Children (FEPEDA), Page 81.

CIRCULATORY / HEART DISEASE Arrhythmia Alliance (A-A), Page 8. European Congenital Heart Disease Organisation (ECHDO), Page 62. European Heart and Lung Transplant Federation (EHLTF), Page 90. European Heart Network (EHN), Page 91. HEART EU (Hyperlipidaemia Education Atherosclerosis Research Trust Foundation), Page 146. Stroke Alliance for Europe (SAFE), Page 183.

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CIVIC / CONSUMER WITH INTEREST IN HEALTHCARE Active Citizenship Network (ACN), Page 1. BEUC, the European Consumers’ Organisation, Page 15. EU Civil Society Contact Group, Page 29. European Community of Consumer Co-operatives (Euro Coop), Page 60. European Federation of National Organisations working with the Homeless (FEANTSA), Page 78. Health Action International–Europe (HAI-Europe), Page 141.

COMPLEMENTARY / ALTERNATIVE MEDICINES European Federation of Homeopathic Patients’ Associations (EFHPA), Page 77. European Federation of Patients’ Associations for Anthroposophic Medicine (EFPAM), Page 82.

CONGENITAL Cerebral Palsy-European Communities Association (CP-ECA), Page 17. European Down Syndrome Association (EDSA), Page 66.

DEMENTIA Alzheimer Europe (AE), Page 6.

DIABETES International Diabetes Federation-European Region (IDF-Europe), Page 157.

DISABILITY Association for Research and Training on Integration in Europe (ARFIE), Page 9. Disabled Peoples’ International-Europe (DPI-Europe), Page 28. Eucrea International, Page 30. European Association of Cochlear Implant Users (EURO-CIU), Page 48. European Association of Service Providers for Persons with Disabilities (EASPD), Page 50. European Blind Union (EBU), Page 51. European Coalition for Community Living (ECCL), Page 58. European Deafblind Network (EDbN), Page 63. European Disability Forum (EDF), Page 65. European Federation of Hard of Hearing People (EFHOH), Page 76. European Federation of Parents of Hearing-Impaired Children (FEPEDA), Page 81. European League of Stuttering Associations (ELSA), Page 97. European Network on Independent Living (ENIL), Page 110. European Spinal Cord Injury Federation (ESCIF), Page 127. European Union of the Deaf (EUD), Page 128. EUROPEAN PATIENT GROUP DIRECTORY, 2009-2010 © BURSON-MARSTELLER / PATIENTVIEW

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EuroTinnitus Association (EuroTA), Page 132. Hear-it AISBL (Hear-it), Page 145. Information Society Open to ImpairmentS (e-ISOTIS), Page 153. Retina International, Page 176. Social Firms Europe (CEFEC), Page 182.

ENDOCRINE Hypoparathyroidism Europe (HPTH Europe), Page 149.

EQUITY, PROMOTION OF Association for Research and Training on Integration in Europe (ARFIE), Page 9. Correlation, Page 24. Inclusion Europe, Page 152.

FAMILIES AND HEALTH Brain Injured and Families European Confederation (BIF), Page 16. Confederation of Family Organisations in the European Union (COFACE), Page 21. European Family Therapy Association (EFTA), Page 70. European Federation of Associations of Families of People with Mental Illness (EUFAMI), Page 73.

GASTRO-INTESTINAL Association of European Coeliac Societies (AOECS), Page 11. European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA), Page 75. European Ostomy Association (EOA), Page 115.

GENDER HEALTH European Institute of Women’s Health (EIWH), Page 93. European Men’s Health Forum (EMHF), Page 100.

GENERAL HEALTHCARE European Patients Empowerment for Customised Solutions (EPECS), Page 118. European Patients’ Forum (EPF), Page 119. Health Care Without Harm Europe (HCWH Europe), Page 143. Iatrogenic Europe Unite (IEU-Alliance), Page 150. Iatrogenic Europe Unite-Alliance (IEU-Alliance), Page 151. International Alliance of Patients’ Organizations (IAPO), Page 154.

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GENETIC / RARE DISEASE European Association against Leukodystrophies (ELA), Page 45. European Marfan Support Network (EMSN), Page 99. European Network of Rare Disease Help Lines (Rapsody Online), Page 109. Alfa Europe Federation (AEF), Page 4. Alliance Sanfilippo, Page 5. Barth Syndrome Trust (BST), Page 14. Cystic Fibrosis Europe (CF Europe; CFE), Page 25. DEBRA International, Page 27. euro-Ataxia, Page 32. European Chromosome 11q Network (11q Network), Page 57. European Down Syndrome Association (EDSA), Page 66. European Federation for Neurofibromatosis Associations (NF Europe), Page 71. European Galactosaemia Society (EGS), Page 86. European Genetic Alliances Network (EGAN), Page 87. European Huntington’s Disease Network (EHDN), Page 92. European Society for Phenylketonuria and Allied Disorders treated as Phenylketonuria (E.S.PKU), Page 126. EURORDIS (European Organisation for Rare Diseases), Page 131. Fabry International Network (FIN), Page 133. Federation of European Williams Syndrome Associations (FEWS), Page 135. International Pompe Association (IPA), Page 161. ORPHANET, Page 171. Osteogenesis Imperfecta Federation Europe (OIFE), Page 172. Retina International, Page 176. Rett Syndrome Europe (RSE), Page 177. SMA Europe, Page 180.

HIV / AIDS AIDS Action Europe, Page 3. Eurasian Harm Reduction Network (EHRN), Page 31. European AIDS Treatment Group (EATG), Page 42. European Coalition of Positive People (ECPP), Page 59. HIV Europe, Page 148.

INFECTIOUS Confederation of Meningitis Organisations (CoMO), Page 22.

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European Polio Union (EPU), Page 121. Polio Initiative Europa (PIE), Page 174.

LEARNING DISABILTY Autism-Europe (A-E), Page 13. European Dyslexia Association (EDA), Page 67. Inclusion Europe, Page 152.

LIVER DISEASE European Liver Patients Association (ELPA), Page 98.

MENTAL HEALTH ADHD-Europe, Page 2. Euro-Methwork, Page 36. Europe Against Drugs (EURAD), Page 41. European Depression Association (EDA), Page 64. European Federation of Associations of Families of People with Mental Illness (EUFAMI), Page 73 European Network of (Ex-) Users and Survivors of Psychiatry (ENUSP), Page 106. European Regional Network for User-Led Projects (User-Run Network; URN), Page 123. European Society for Mental Health and Deafness (ESMHD), Page 125. Euro-Psy-Rehabilitation (Europsy), Page 130. GAMIAN-Europe (Global Alliance of Mental Illness Advocacy Networks-Europe; GE), Page 137. Mental Disability Advocacy Center (MDAC), Page 166. Mental Health Europe – Santé Mentale Europe (MHE-SME), Page 167. National Suicide Bereavement Support Network (NSBSN), Page 169. Open Society Mental Health Initiative (MHI), Page 170.

NEUROLOGICAL CONDITIONS Alzheimer Europe (AE), Page 6. Brain Injured and Families European Confederation (BIF), Page 16. Cerebral Palsy-European Communities Association (CP-ECA), Page 17. European Alliance of Neuro-Muscular Disorders Association (EAMDA), Page 44. European Brain Council (EBC), Page 52. European Brain Injury Society (EBIS), Page 53. European Concerted Action and Research in Epilepsy (EUCARE), Page 61. European Dystonia Federation (EDF), Page 68. European Federation of Neurological Associations (EFNA), Page 79. EUROPEAN PATIENT GROUP DIRECTORY, 2009-2010 © BURSON-MARSTELLER / PATIENTVIEW

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European Headache Alliance (EHA), Page 89. European Huntington’s Disease Network (EHDN), Page 92. European Multiple Sclerosis Platform (EMSP), Page 101. European Network of Fibromyalgia Associations (ENFA), Page 107. European Neuro Muscular Centre (ENMC), Page 111. European Pain Network (EPN), Page 116. European Parkinson’s Disease Association (EPDA), Page 117. European Spinal Cord Injury Federation (ESCIF), Page 127. International Bureau for Epilepsy-Europe (IBE-Europe), Page 156. SMA Europe, Page 180. TREAT-NMD Neuromuscular Network (TREAT-NMD), Page 185.

OLDER PEOPLE European Federation of Older Persons (EURAG), Page 80. European Older People’s Platform, The (AGE), Page 113. HelpAge International (HAI), Page 147. Information Society Open to ImpairmentS (e-ISOTIS), Page 153.

PALLIATIVE Right to Die Europe (RtD-E), Page 178.

PUBLIC HEALTH Club Européen de la Santé (CES), Page 18. Eurasian Harm Reduction Network (EHRN), Page 31. European Alliance for Access to Safe Medicines (EAASM), Page 43. European Association for Injury Prevention and Safety Promotion (EuroSafe), Page 47. European Community of Consumer Co-operatives (Euro Coop), Page 60. European Federation of Road Traffic Victims (FEVR), Page 84. European Network for Smoking Prevention (ENSP), Page 105. European Network of Quitlines (ENQ), Page 108. European Nutrition for Health Alliance (ENHA), Page 112. European Public Health Alliance (EPHA), Page 122. Health and Environment Alliance (HEAL), Page 142. Health First Europe (HFE), Page 144. International Union for Health Promotion and Education/European Region (IUHPE/EURO), Page 162. Pesticide Action Network Europe (PAN Europe), Page 173. Smokefree Partnership (SFP), Page 181.

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RENAL European Kidney Health Alliance (EKHA), Page 94. European Kidney Patients’ Federation (CEAPIR), Page 95.

REPRODUCTIVE / SEXUAL HEALTH ASTRA Network, Page 12. EuroNGOs, Page 37. European Endometriosis Alliance (EEA), Page 69. European Sexual Health Alliance (ESHA), Page 124. European Youth Network on Sexual and Reproductive Rights (YouAct), Page 129. Fertility Europe (FE), Page 136. Global Campaign Europe (GCE), Page 138. International Planned Parenthood Federation European Network (IPPF EN), Page 160.

RESPIRATORY European Federation of Allergy and Airways Diseases Patients Associations (EFA), Page 72. Pulmonary Hypertension Association Europe (PHA Europe), Page 175.

SCIENTIFIC RESEARCH European Network for Patients Partnering in Clinical Research (ENPCR), Page 104. European Platform for Patients’ Organisations, Science and Industry (EPPOSI), Page 120.

SKIN European Federation of Psoriasis Associations (EUROPSO), Page 83. Federation of European Scleroderma Associations (FESCA), Page 134.

URINARY World Federation of Incontinent Patients (WFIP), Page 186.

WOMEN Global Campaign Europe (GCE), Page 138.

YOUNG PEOPLE Coeliac Youth of Europe (CYE), Page 20. European Youth Network on Sexual and Reproductive Rights (YouAct), Page 129.

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A Active Citizenship Network (ACN), Page 1. ADHD-Europe, Page 2. AIDS Action Europe, Page 3. Alfa Europe Federation (AEF), Page 4. Alliance Sanfilippo, Page 5. Alzheimer Europe (AE), Page 6. AntiCoagulation Europe (ACE), Page 7. Arrhythmia Alliance (A-A), Page 8. Association for Research and Training on Integration in Europe (ARFIE), Page 9. Association of European Cancer Leagues (ECL), Page 10. Association of European Coeliac Societies (AOECS), Page 11. ASTRA Network, Page 12. Autism-Europe (A-E), Page 13.

B Barth Syndrome Trust (BST), Page 14. BEUC, the European Consumers’ Organisation, Page 15. Brain Injured and Families European Confederation (BIF), Page 16.

C Cerebral Palsy-European Communities Association (CP-ECA), Page 17. Club Européen de la Santé (CES), Page 18. CML Advocates Network, Page 19. Coeliac Youth of Europe (CYE), Page 20. Confederation of Family Organisations in the European Union (COFACE), Page 21. Confederation of Meningitis Organisations (CoMO), Page 22. CONTICANET, Page 23. Correlation, Page 24. Cystic Fibrosis Europe (CF Europe; CFE), Page 25.

D Das Lebenshaus, Page 26. DEBRA International, Page 27. Disabled Peoples‘ International-Europe (DPI-Europe), Page 28.

E EU Civil Society Contact Group, Page 29. EUROPEAN PATIENT GROUP DIRECTORY, 2009-2010 © BURSON-MARSTELLER / PATIENTVIEW

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E, continued Eucrea International, Page 30. Eurasian Harm Reduction Network (EHRN), Page 31. euro-Ataxia, Page 32. Eurocare, Page 33. Eurocarers, Page 34. Eurochild, Page 35. Euro-Methwork, Page 36. EuroNGOs, Page 37. EUROPA DONNA—the European Breast Cancer Coalition (ED), Page 38. Europa Uomo (EUROMO), Page 39. Europacolon, Page 40. Europe Against Drugs (EURAD), Page 41. European AIDS Treatment Group (EATG), Page 42. European Alliance for Access to Safe Medicines (EAASM), Page 43. European Alliance of Neuro-Muscular Disorders Association (EAMDA), Page 44. European Association against Leukodystrophies (ELA), Page 45. European Association for Children in Hospital (EACH), Page 46. European Association for Injury Prevention and Safety Promotion (EuroSafe), Page 47. European Association of Cochlear Implant Users (EURO-CIU), Page 48. European Association of Patients Organizations of Sarcoidosis and other Granulomatous Disorders (EPOS), Page 49. European Association of Service Providers for Persons with Disabilities (EASPD), Page 50. European Blind Union (EBU), Page 51. European Brain Council (EBC), Page 52. European Brain Injury Society (EBIS), Page 53. European CanCer Organisation (ECCO), Page 54. European Cancer Patient Coalition (ECPC), Page 55. European Cervical Cancer Association (ECCA), Page 56. European Chromosome 11q Network (11q Network), Page 57. European Coalition for Community Living (ECCL), Page 58. European Coalition of Positive People (ECPP), Page 59. European Community of Consumer Co-operatives (Euro Coop), Page 60. European Concerted Action and Research in Epilepsy (EUCARE), Page 61. European Congenital Heart Disease Organisation (ECHDO), Page 62. European Deafblind Network (EDbN), Page 63. European Depression Association (EDA), Page 64. European Disability Forum (EDF), Page 65.

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E, continued European Down Syndrome Association (EDSA), Page 66. European Dyslexia Association (EDA), Page 67. European Dystonia Federation (EDF), Page 68. European Endometriosis Alliance (EEA), Page 69. European Family Therapy Association (EFTA), Page 70. European Federation for Neurofibromatosis Associations (NF Europe), Page 71. European Federation of Allergy and Airways Diseases Patients Associations (EFA), Page 72. European Federation of Associations of Families of People with Mental Illness (EUFAMI), Page 73. European Federation of Associations of Patients with Haemochromatosis (EFAPH), Page 74. European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA), Page 75. European Federation of Hard of Hearing People (EFHOH), Page 76. European Federation of Homeopathic Patients’ Associations (EFHPA), Page 77. European Federation of National Organisations working with the Homeless (FEANTSA), Page 78. European Federation of Neurological Associations (EFNA), Page 79. European Federation of Older Persons (EURAG), Page 80. European Federation of Parents of Hearing-Impaired Children (FEPEDA), Page 81. European Federation of Patients’ Associations for Anthroposophic Medicine (EFPAM), Page 82. European Federation of Psoriasis Associations (EUROPSO), Page 83. European Federation of Road Traffic Victims (FEVR), Page 84. European Federation of Unpaid Parents and Carers at Home (FEFAF), Page 85. European Galactosaemia Society (EGS), Page 86. European Genetic Alliances Network (EGAN), Page 87. European Haemophilia Consortium (EHC), Page 88. European Headache Alliance (EHA), Page 89. European Heart and Lung Transplant Federation (EHLTF), Page 90. European Heart Network (EHN), Page 91. European Huntington’s Disease Network (EHDN), Page 92. European Institute of Women’s Health (EIWH), Page 93. European Kidney Health Alliance (EKHA), Page 94. European Kidney Patients’ Federation (CEAPIR), Page 95. European League Against Rheumatism (EULAR), Page 96. European League of Stuttering Associations (ELSA), Page 97. European Liver Patients Association (ELPA), Page 98. European Marfan Support Network (EMSN), Page 99. European Men’s Health Forum (EMHF), Page 100. European Multiple Sclerosis Platform (EMSP), Page 101. European Myeloma Platform (EMP), Page 102.

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European Network for Children with Arthritis (ENCA), Page 103. European Network for Patients Partnering in Clinical Research (ENPCR), Page 104. European Network for Smoking Prevention (ENSP), Page 105. European Network of (Ex-) Users and Survivors of Psychiatry (ENUSP), Page 106. European Network of Fibromyalgia Associations (ENFA), Page 107. European Network of Quitlines (ENQ), Page 108. European Network of Rare Disease Help Lines (Rapsody Online), Page 109. European Network on Independent Living (ENIL), Page 110. European Neuro Muscular Centre (ENMC), Page 111. European Nutrition for Health Alliance (ENHA), Page 112. European Older People’s Platform, The (AGE), Page 113. European Osteoporosis League (EOL), Page 114. European Ostomy Association (EOA), Page 115. European Pain Network (EPN), Page 116. European Parkinson’s Disease Association (EPDA), Page 117. European Patients Empowerment for Customised Solutions (EPECS), Page 118. European Patients’ Forum (EPF), Page 119. European Platform for Patients’ Organisations, Science and Industry (EPPOSI), Page 120. European Polio Union (EPU), Page 121. European Public Health Alliance (EPHA), Page 122. European Regional Network for User-Led Projects (User-Run Network; URN), Page 123. European Sexual Health Alliance (ESHA), Page 124. European Society for Mental Health and Deafness (ESMHD), Page 125. European Society for Phenylketonuria and Allied Disorders treated as Phenylketonuria (E.S.PKU), Page 126. European Spinal Cord Injury Federation (ESCIF), Page 127. European Union of the Deaf (EUD), Page 128. European Youth Network on Sexual and Reproductive Rights (YouAct), Page 129. Euro-Psy-Rehabilitation (Europsy), Page 130. EURORDIS (European Organisation for Rare Diseases), Page 131. EuroTinnitus Association (EuroTA), Page 132.

F Fabry International Network (FIN), Page 133. Federation of European Scleroderma Associations (FESCA), Page 134. Federation of European Williams Syndrome Associations (FEWS), Page 135. Fertility Europe (FE), Page 136.

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G GAMIAN-Europe (Global Alliance of Mental Illness Advocacy Networks-Europe; GE), Page 137. Global Campaign Europe (GCE), Page 138. Global Gist-Network (GGN), Page 139. Global Lung Cancer Coalition (GLCC), Page 140.

H Health Action International–Europe (HAI-Europe), Page 141. Health and Environment Alliance (HEAL), Page 142. Health Care Without Harm Europe (HCWH Europe), Page 143. Health First Europe (HFE), Page 144. Hear-it AISBL (Hear-it), Page 145. HEART EU (Hyperlipidaemia Education Atherosclerosis Research Trust Foundation), Page 146. HelpAge International (HAI), Page 147. HIV Europe, Page 148. Hypoparathyroidism Europe (HPTH Europe), Page 149.

I Iatrogenic Europe Unite (IEU-Alliance), Page 150. Iatrogenic Europe Unite-Alliance (IEU-Alliance), Page 151. Inclusion Europe, Page 152. Information Society Open to ImpairmentS (e-ISOTIS), Page 153. International Alliance of Patients’ Organizations (IAPO), Page 154. International Brain Tumour Alliance (IBTA), Page 155. International Bureau for Epilepsy-Europe (IBE-Europe), Page 156. International Diabetes Federation-European Region (IDF-Europe), Page 157. International Osteoporosis Foundation (IOF), Page 158. International Patient Organisation for Primary Immunodeficiencies (IPOPI), Page 159. International Planned Parenthood Federation European Network (IPPF EN), Page 160. International Pompe Association (IPA), Page 161. International Union for Health Promotion and Education/European Region (IUHPE/EURO), Page 162.

L Leukämie-Online, Page 163. Lupus Europe, Page 164. Lymphoma Coalition, Page 165.

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M Mental Disability Advocacy Center (MDAC), Page 166. Mental Health Europe – Santé Mentale Europe (MHE-SME), Page 167. Myeloma Euronet (ME), Page 168.

N National Suicide Bereavement Support Network (NSBSN), Page 169.

O Open Society Mental Health Initiative (MHI), Page 170. ORPHANET, Page 171. Osteogenesis Imperfecta Federation Europe (OIFE), Page 172.

P Pesticide Action Network Europe (PAN Europe), Page 173. Polio Initiative Europa (PIE), Page 174. Pulmonary Hypertension Association Europe (PHA Europe), Page 175.

R Retina International, Page 176. Rett Syndrome Europe (RSE), Page 177. Right to Die Europe (RtD-E), Page 178.

S Sarcoma Patients EuroNet Association (SPAEN), Page 179. SMA Europe, Page 180. Smokefree Partnership (SFP), Page 181. Social Firms Europe (CEFEC), Page 182. Stroke Alliance for Europe (SAFE), Page 183.

T Thalassaemia International Federation (TIF), Page 184. TREAT-NMD Neuromuscular Network (TREAT-NMD), Page 185.

W World Federation of Incontinent Patients (WFIP), Page 186.

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(11q Network), European Chromosome 11q Network, Page 57.

A (A-A), Arrhythmia Alliance, Page 8. (ACE), AntiCoagulation Europe, Page 7. (ACN), Active Citizenship Network, Page 1. (AE), Alzheimer Europe, Page 6. (A-E), Autism-Europe, Page 13. (AEF), Alfa Europe Federation, Page 4. (AGE), European Older People’s Platform, Page 113. (AOECS), Association of European Coeliac Societies, Page 11. (ARFIE), Association for Research and Training on Integration in Europe, Page 9.

B (BIF), Brain Injured and Families European Confederation, Page 16. (BST), Barth Syndrome Trust, Page 14.

C (CEAPIR), European Kidney Patients’ Federation, Page 95. (CEFEC), Social Firms Europe, Page 182. (CES), Club Européen de la Santé, Page 18. (CF Europe; CFE), Cystic Fibrosis Europe, Page 25. (COFACE), Confederation of Family Organisations in the European Union, Page 21. (CoMO), Confederation of Meningitis Organisations, Page 22. (CP-ECA), Cerebral Palsy-European Communities Association, Page 17. (CYE), Coeliac Youth of Europe, Page 20.

D (DPI-Europe), Disabled Peoples’ International-Europe, Page 28.

E (EAASM), European Alliance for Access to Safe Medicines, Page 43. (EACH), European Association for Children in Hospital, Page 46. (EAMDA), European Alliance of Neuro-Muscular Disorders Association, Page 44. (EASPD), European Association of Service Providers for Persons with Disabilities, Page 50. (EATG), European AIDS Treatment Group, Page 42. (EBC), European Brain Council, Page 52.

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Indexes / A-Z list of acronyms

Indexes A-Z LIST OF SPECIALISATIONS A-Z LIST OF ENTRIES A-Z LIST OF ACRONYMS (CONTINUED)

E, continued (EBIS), European Brain Injury Society, Page 53. (EBU), European Blind Union, Page 51. (ECCA), European Cervical Cancer Association, Page 56. (ECCL), European Coalition for Community Living, Page 58. (ECCO), European CanCer Organisation, Page 54. (ECHDO), European Congenital Heart Disease Organisation, Page 62. (ECL), Association of European Cancer Leagues, Page 10. (ECPC), European Cancer Patient Coalition, Page 55. (ECPP), European Coalition of Positive People, Page 59. (ED), EUROPA DONNA—the European Breast Cancer Coalition, Page 38. (EDA), European Depression Association, Page 64. (EDA), European Dyslexia Association, Page 67. (EDbN), European Deafblind Network, Page 63. (EDF), European Disability Forum, Page 65. (EDF), European Dystonia Federation, Page 68. (EDSA), European Down Syndrome Association, Page 66. (EEA), European Endometriosis Alliance, Page 69. (EFA), European Federation of Allergy and Airways Diseases Patients Associations, Page 72. (EFAPH), European Federation of Associations of Patients with Haemochromatosis, Page 74. (EFCCA), European Federation of Crohn’s and Ulcerative Colitis Associations, Page 75. (EFHOH), European Federation of Hard of Hearing People, Page 76. (EFHPA), European Federation of Homeopathic Patients’ Associations, Page 77. (EFNA), European Federation of Neurological Associations, Page 79. (EFPAM), European Federation of Patients’ Associations for Anthroposophic Medicine, Page 82. (EFTA), European Family Therapy Association, Page 70. (EGAN), European Genetic Alliances Network, Page 87. (EGS), European Galactosaemia Society, Page 86. (EHA), European Headache Alliance, Page 89. (EHC), European Haemophilia Consortium, Page 88. (EHDN), European Huntington’s Disease Network, Page 92. (EHLTF), European Heart and Lung Transplant Federation, Page 90. (EHN), European Heart Network, Page 91. (EHRN), Eurasian Harm Reduction Network, Page 31. (e-ISOTIS), Information Society Open to ImpairmentS, Page 153. (EIWH), European Institute of Women’s Health, Page 93. (EKHA), European Kidney Health Alliance, Page 94. (ELA), European Association against Leukodystrophies, Page 45.

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Indexes / A-Z list of acronyms

Indexes A-Z LIST OF SPECIALISATIONS A-Z LIST OF ENTRIES A-Z LIST OF ACRONYMS (CONTINUED)

E, continued (ELPA), European Liver Patients Association, Page 98. (ELSA), European League of Stuttering Associations, Page 97. (EMHF), European Men’s Health Forum, Page 100. (EMP), European Myeloma Platform, Page 102. (EMSN), European Marfan Support Network, Page 99. (EMSP), European Multiple Sclerosis Platform, Page 101. (ENCA), European Network for Children with Arthritis, Page 103. (ENFA), European Network of Fibromyalgia Associations, Page 107. (ENHA), European Nutrition for Health Alliance, Page 112. (ENIL), European Network on Independent Living, Page 110. (ENMC), European Neuro Muscular Centre, Page 111. (ENPCR), European Network for Patients Partnering in Clinical Research, Page 104. (ENQ), European Network of Quitlines, Page 108. (ENSP), European Network for Smoking Prevention, Page 105. (ENUSP), European Network of (Ex-) Users and Survivors of Psychiatry, Page 106. (EOA), European Ostomy Association, Page 115. (EOL), European Osteoporosis League, Page 114. (EPDA), European Parkinson’s Disease Association, Page 117. (EPECS), European Patients Empowerment for Customised Solutions, Page 118. (EPF), European Patients’ Forum, Page 119. (EPHA), European Public Health Alliance, Page 122. (EPN), European Pain Network, Page 116. (EPOS), European Association of Patients Organizations of Sarcoidosis and other Granulomatous Disorders, Page 49. (EPPOSI), European Platform for Patients’ Organisations, Science and Industry, Page 120. (EPU), European Polio Union, Page 121. (ESCIF), European Spinal Cord Injury Federation, Page 127. (ESHA), European Sexual Health Alliance, Page 124. (ESMHD), European Society for Mental Health and Deafness, Page 125. (E.S.PKU), European Society for Phenylketonuria and Allied Disorders treated as Phenylketonuria, Page 126. (EUCARE), European Concerted Action and Research in Epilepsy, Page 61. (EUD), European Union of the Deaf, Page 128. (EUFAMI), European Federation of Associations of Families of People with Mental Illness, Page 73. (EULAR), European League Against Rheumatism, Page 96. (EURAD), Europe Against Drugs, Page 41. (EURAG), European Federation of Older Persons, Page 80.

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Indexes / A-Z list of acronyms

Indexes A-Z LIST OF SPECIALISATIONS A-Z LIST OF ENTRIES A-Z LIST OF ACRONYMS (CONTINUED)

E, continued (EURO-CIU), European Association of Cochlear Implant Users, Page 48. (Euro Coop), European Community of Consumer Co-operatives, Page 60. (EUROMO), Europa Uomo, Page 39. (European Organisation for Rare Diseases), EURORDIS, Page 131. (EUROPSO), European Federation of Psoriasis Associations, Page 83. (Europsy), Euro-Psy-RehabilitationEuro-Psy-Rehabilitation, Page 130. (EuroSafe), European Association for Injury Prevention and Safety Promotion, Page 47. (EuroTA), EuroTinnitus Association, Page 132.

F (FE), Fertility Europe, Page 136. (FEANTSA), European Federation of National Organisations working with the Homeless, Page 78. (FEFAF), European Federation of Unpaid Parents and Carers at Home, Page 85. (FEPEDA), European Federation of Parents of Hearing-Impaired Children, Page 81. (FESCA), Federation of European Scleroderma Associations, Page 134. (FEVR), European Federation of Road Traffic Victims, Page 84. (FEWS), Federation of European Williams Syndrome Associations, Page 135. (FIN), Fabry International Network, Page 133.

G (GCE), Global Campaign Europe, Page 138. (GE), GAMIAN-Europe, Global Alliance of Mental Illness Advocacy Networks-Europe, Page 137. (GGN), Global Gist-Network, Page 139. (GLCC), Global Lung Cancer Coalition, Page 140.

H (HAI), HelpAge International, Page 147. (HAI-Europe), Health Action International–Europe, Page 141. (HCWH Europe), Health Care Without Harm Europe, Page 143. (HEAL), Health and Environment Alliance, Page 142. (Hear-it), Hear-it AISBL, Page 145. HEART EU (Hyperlipidaemia Education Atherosclerosis Research Trust Foundation), Page 146. (HFE), Health First Europe, Page 144. (HPTH Europe), Hypoparathyroidism Europe, Page 149.

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Indexes / A-Z list of acronyms

Indexes A-Z LIST OF SPECIALISATIONS A-Z LIST OF ENTRIES A-Z LIST OF ACRONYMS (CONTINUED)

I (IAPO), International Alliance of Patients’ Organizations, Page 154. (IBE-Europe), International Bureau for Epilepsy-Europe, Page 156. (IBTA), International Brain Tumour Alliance, Page 155. (IDF-Europe), International Diabetes Federation-European Region, Page 157. (IEU-Alliance), Iatrogenic Europe Unite, Page 150. (IEU-Alliance), Iatrogenic Europe Unite-Alliance, Page 151. (IOF), International Osteoporosis Foundation, Page 158. (IPA), International Pompe Association, Page 161. (IPOPI), International Patient Organisation for Primary, Page 159. (IPPF EN), International Planned Parenthood Federation European Network, Page 160. (IUHPE/EURO), International Union for Health Promotion and Education/European Region, Page 162.

M (MDAC), Mental Disability Advocacy Center, Page 166. (ME), Myeloma Euronet, Page 168. (MHE-SME), Mental Health Europe – Santé Mentale Europe, Page 167. (MHI), Open Society Mental Health Initiative, Page 170.

N (NF Europe), European Federation for Neurofibromatosis Associations, Page 71. (NSBSN), National Suicide Bereavement Support Network, Page 169.

O (OIFE), Osteogenesis Imperfecta Federation Europe, Page 172.

P PAN Europe, Pesticide Action Network Europe, Page 173. PHA Europe, Pulmonary Hypertension Association Europe, Page 175. (PIE), Polio Initiative Europa, Page 174.

R (Rapsody Online), European Network of Rare Disease Help Lines, Page 109. (RSE), Rett Syndrome Europe, Page 177. (RtD-E), Right to Die Europe, Page 178.

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Indexes / A-Z list of acronyms

Indexes A-Z LIST OF SPECIALISATIONS A-Z LIST OF ENTRIES A-Z LIST OF ACRONYMS (CONTINUED)

S (SAFE), Stroke Alliance for Europe, Page 183. (SFP), Smokefree Partnership, Page 181. (SPAEN), Sarcoma Patients EuroNet Association, Page 179.

T (TIF), Thalassaemia International Federation, Page 184. (TREAT-NMD), TREAT-NMD Neuromuscular Network, Page 185.

U (User-Run Network; URN), European Regional Network for User-Led Projects, Page 123.

W (WFIP), World Federation of Incontinent Patients, Page 186.

Y (YouAct), European Youth Network on Sexual and Reproductive Rights, Page 129.

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Preface from the publisher PREFACE FROM THE PUBLISHER Burson-Marsteller http://www.bmbrussels.eu 37 Square de Meeûs 1000 Brussels Belgium T: 0032-(0)2-743-66-11 email: david.earnshaw@bm.com http://www.bmbrussels.eu Contact person: David Earnshaw.

Burson-Marsteller is again proud to publish this, the third edition of the European Patient Group Directory. The overwhelmingly positive response to the first and second editions is just one indication of the important role that patient groups now play in European Union health policy development. As last year, the Directory has been produced in cooperation with PatientView. This edition contains not only updated information on the groups in last year’s Directory, but also profiles of some 25 new groups. As such, we hope it once again proves to be a useful resource to all those involved in the EU health policy debate, including patient groups themselves, politicians, officials, companies, NGOs and other stakeholders. EU health policy is today at a crossroads. The Irish referendum on the Lisbon Treaty is to be held in the same week as this Directory is launched (early October 2009); a new European Commission is due to enter office; and the June 2009 European elections saw the turnover of half of the European Parliament. It will be important to maintain the continuity and momentum of the last five years in health policy during this coming period of institutional change and uncertainty. 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 the prevention, screening and management of Europe’s major diseases, to measures on tobacco control, there is much that the EU can do to help. Indeed, in many areas of health policy, it is becoming apparent that the scale of the challenge is too great for Member States alone. Europe can and should act. We both hope that you find this Directory useful. David Earnshaw Chairman Burson Marsteller Brussels

Louise Fox Deputy Head, EMEA Healthcare Burson Marsteller Brussels

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Preface from the author PREFACE FROM THE AUTHOR PatientView http://www.patient-view.com Woodhouse Place Upper Woodhouse Knighton Powys, LD7 1NG, UK T: 0044-(0)1547-520-965 email: info@patient-view.com Contact person: Clive Nead

Introduction The 2009-2010 Directory holds an overview of information on 186 patient groups. Most of the featured organisations were also in the previous edition, although 11 of the 2008 entries have been dropped (mainly due to their closure or merger). Meanwhile, 25 new entrants have been listed, including several cancer and rare-disease organisations—two of the fastest-growing sectors of the pan-European patient movement. A change in editorial policy on patient group financial data Previous editions of the Directory relied on patient groups to volunteer information about their income and its sources. This 3rd edition of the European Patient Group Directory differs from its predecessors by including funding details of patient organisations drawn, not only from the groups themselves, but also from other public-domain information. Pharmaceutical industry contributions to the patient groups are listed (when data are available). As a result of this adjustment in editorial policy, Burson-Marsteller and PatientView are confident that the latest Directory now provides a unique record of the financial position of the pan-European patient-group scene. The above change in reporting practice follows correspondence with Robert Madelin, European Commission Director General for Health and Consumers. Writing to us in April 2008, Mr Madelin rightly observed that the Directory should contain reliable, publicly-available financial data about patient groups. In a separate development, a number of patient groups have themselves recently made moves themselves to increase the transparency of their relationships with pharma companies.Noteworthy is a June 2009 collaborative agreement from the following seven organisations (all are listed in the Directory): —European AIDS Treatment Group (EATG). —European Cancer Patient Coalition (ECPC). —European Federation of Neurological Associations (EFNA). —European Organisation for Rare Diseases (EURORDIS). —European Patients’ Forum (EPF). —International Alliance of Patients’ Organizations (IAPO). —International Patient Organisation for Primary ImmunoSdeficiencies (IPOPI).

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Preface from the author

Press statements from the seven refer to a “transparent and robust Code of Good Practice to guide the relations between patient organisations and industry (including the latter’s representatives and consultants)” [http://www.ecpc-online.org/advocacy-toolbox/code-of-practice.html] In some cases, it was necessary to report financial data in a currency other than euro as a result of patient groups themselves recording this data in other currencies. Approximate conversions to euro have been made in these cases, on the basis of exchange rates on 1 September 2009. Although the financial data of some groups listed in this Directory remains difficult to obtain, PatientView nonetheless has observed that more groups than ever are forthcoming with such information. These groups are aware of the greater demands now present in Europe (and worldwide) for better corporate governance, and for proper, professional, financial accountancy among all types of NGOs. The patient movement may still be young, but many of its members are maturing fast to meet these new pressures. How the data in the Directory was collected About half of the groups in the Directory contributed to their entries. Information was supplemented by the websites of groups’ umbrella organisations, and by other trustworthy online public resources. In particular, three reputable sources were used: —The website of the European Commission ETI Register of Interest Representatives. —Details of GSK’s funding of pan-European patient groups, listed in the Responsibility’ section of its website. —And, for UK-headquartered groups, the website of the Charity Commission. About the selection of groups for the Directory Inevitably, some degree of personal judgement determines which organisations should be included in a directory of this sort. PatientView has, nonetheless, developed a set of criteria to indicate whether an organisation might be eligible for inclusion in the Directory. The Directory considers an organisation ‘pan-European’ if it has members or interests in two, three, or more European countries. ‘Europe’ is defined as EU Member Nations, EU ‘Ascendant Nations’, or countries with borders adjacent to the EU. The Directory’s definition of the phrase ‘patient group’ is wide-ranging, taking in organisations that specialise in carers, children, consumers, disability, older people, poverty, and research—if they link to, and directly impact, health issues. 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 all healthcare organisations that clearly do not represent the patient perspective first and foremost (such as medical professional bodies and societies). Today’s campaigning alliances may include patient groups, pharma companies, professional organisations, and academic bodies. The Directory lists some alliances, but only when patient groups seem to be acting as full and true partners within the EUROPEAN PATIENT GROUP DIRECTORY, 2009-2010 © BURSON-MARSTELLER / PATIENTVIEW

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collaborative. Most of Europe’s citizens’ 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 one example of a citizens’ group linked with healthcare issues. The Directory has examined international (that is, worldwide/global) groups on a caseby-case basis. The presence of European member organisations is not enough, on its own, to guarantee entry in the Directory for an international group. International groups should either exert a strong presence in Europe, or possess an effective (and, at least, semi-independent) European arm. One key quality of any advocacy group is its ability to communicate with the public— 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. A words of thanks PatientView would like to thank all the individuals and organisations helping in the creation of this Directory, particularly David Earnshaw, Sylwia Staszak, Robert Madelin, and the European Health Forum Gastein—plus the many patient groups that have freely provided their support and time. Clive Nead Editor European Patient Group Directory September 2009

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Key to data

ORGANISATION’S SPECIALITIES /

Name of organisation (ACRONYM) Primary website A senior executive or contact person Their position within the organisation Address of headquarters

Short description of the organisation and its main aims

General contact telephone number Fax number (if used) Contact email for the general public

Organisation’s logo or an image representing an aspect of the organisation’s outlook or activities Images (apart from logos) were provided by Henry Nead of PatientView, or the National Institutes of Health (NIH), or Wikimedia Commons

“

Short quotation summing up some of the organisation’s ethos or recent activities

Note: use of a dash [-] in any section means either that the information does not appear to be publicly available, or that the information is not relevant to the organisation. Geographic remit: Organisation’s area of operations (Europe, parts of Europe, or beyond Europe). Annual funding / income (most recent): Organisation’s most-recent reported annual-funding amount/ turnover/revenue. Mention of the word “Register” refers to the website of the European Commission Register of Interest Representatives (ETI register). Mention of the acronym “GSK” refers to details of GSK’s pan-European patient-group funding, on the ‘Responsibility’ section of its website. Pharmaceutical funding: Sources of funding, if from pharmaceutical companies, pharma trade associations, or pharma foundations. Names given when publicly known. Non-pharma funding: Other sources of funding. Names given when publicly known. Number of members: Number of members, and the number of the countries in which the members are based. Countries of members: Names of the European countries from which member groups are drawn (only members based in Europe are included). Number of full-time employees: Number of volunteers: Affiliations: Organisation’s own membership of umbrella organisations.

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CIVIC / CONSUMER WITH INTEREST IN HEALTHCARE /

Active Citizenship Network (ACN) http://www.activecitizenship.net Director: Melody Ross

Via Flaminia 53 00196 Rome Italy

T: 0039-(0)6-36-71-81 F: 0039-(0)6-36-71-83-33 Email: info@activecitizenship.net

A European network promoted by the Italian civic group Cittadinanzattiva. Has been campaigning on behalf of European patients’ rights for 8 years, and is advocating official EU recognition of a European Patients’ Rights Day (EPRD), to be held every April 18th. ACN is also striving to have patients’ rights given Europe-wide legal status.

“

Patients rights’ reaffirm fundamental human rights in healthcare. With the increasing mobility of citizens within Europe, and growing complexities in healthcare, it becomes even more essential to have a common set of patients’ rights to guarantee the same quality of healthcare for all European citizens. Ordinary citizens working together can do extraordinary things. This we have seen with the growing movement for patients’ rights in Europe.

Geographic remit: Europe.

Annual funding / income (most recent): €308,000. ACN notes that all funding is project oriented. Pharmaceutical funding: Fondiazione MSD; Lilly; PhRMA; Roche; Sanofi-Aventis. Non-pharma funding: European Commission (DG Education and Culture, DG SANCO, DG Employment and Social Affairs); King Baudouin Foundation; Unicredit. Again, all funding project based. Number of members: Works with around 100 partner organisations from 30 EU Member States and candidate countries. Countries of members: Partnerships (rather than membership) with organisations in 30 European countries. Number of full-time employees: 2.5. Number of volunteers: Affiliations: Cittadinanzattiva.

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MENTAL HEALTH /

ADHD-Europe http://www.adhdeurope.eu Coordinator: Rita Bollaert

Avenskouter 13 9820 Merelbeke Belgium

T: 0032-9-232-10-89 F: Email: info@adhdeurope.eu

Advances the rights of people affected by 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.

“

ADHD-Europe wants to raise public awareness about ADHD, and influence European decision-makers on behalf of people affected by the disorder. ADHD-Europe will do this through the prevention of stigma and discriminatory practices, and through the promotion of inclusive practices in the medical, family, school and labour settings across Europe.

Geographic remit: Europe. Annual funding / income (most recent): ADHD-Europe states that it has no funding at present. The ETI Register notes that it received €2,800 in 2009 from members’ contributions. Pharmaceutical funding: ADHD-Europe states that its policy at present is not to accept funding from pharmaceutical companies. Non-pharma funding: ADHD-Europe notes that it is looking for co-funding opportunities from the European Commission. Number of members: 26 member associations from 19 European countries. Countries of members: Austria, Belgium, Croatia, Denmark, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Luxembourg, Malta, Netherlands, Norway, Poland, Spain, Sweden, Turkey. Number of full-time employees: None. Number of volunteers: Staffed mainly by volunteers. Affiliations: -

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HIV / AIDS /

AIDS Action Europe http://www.aidsactioneurope.org Executive Co-ordinator: Martine de Schutter

T: 0031-(0)20-626-26-69 F: 0031-(0)20-627-52-21 Email: office@aidsactioneurope.org

Through advocacy and agenda-setting at global, European, national and local levels, AIDS Action Europe aims to influence AIDS policies. 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 through capacity-building projects and its Clearinghouse platform (http://www.hivaidsclearinghouse.eu), as well as other regular communication activities.

“

AIDS Action Europe Office Soa Aids Nederland Keizersgracht 392 1016 GB Amsterdam The Netherlands

Our mission is to unite civil society to work towards a more effective response to the HIV epidemic in Europe. We strive for better protection of human rights and universal access to prevention, treatment, care and support.

Geographic remit: Europe.

Annual funding / income (most recent): €377,000. Pharmaceutical funding: Bristol Myers Squibb; Gilead; GSK’s Positive Action Programme. GSK points out that its 2008 donation of €76,000 represented 20% of the organisation’s revenue that year. Non-pharma funding: Bill and Melinda Gates Foundation; European Commission Public Health Programme; German AIDS Foundation; International Council of AIDS Service Organizations (ICASO). Number of members: 238 member organisations from 26 European countries. Countries of members: Albania, Austria, Belgium, Bosnia and Herzegovina, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Macedonia, Malta, Netherlands, Norway, Poland, Portugal, Romania, Switzerland, UK. Number of full-time employees: 1. Number of volunteers: None. Affiliations: International Council of AIDS Service Organizations (ICASO).

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GENETIC / RARE DISEASES /

Alfa Europe Federation (AEF) http://www.alfaeurope.org Secretary / Communications Officer: Kim Hovmann

Lavendelweg 10 45770 Marl Germany

T: 0049-2365-698-260 F: 00353-1-452-4341 Email: khovmann@alfa-1.dk

The 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 and psychological support and medically-necessary treatment.

“

We use and create services and tools. We share this knowledge and skills to provide a much-improved understanding of the condition.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Donations; membership fees. Number of members: 10 member national associations from 10 European countries. Countries of members: Austria, Denmark, France, Germany, Italy, Ireland, Norway, Spain, Sweden, UK. Number of full-time employees: Number of volunteers: Volunteers do work for AEF. Affiliations: European Organisation for Rare Diseases (EURORDIS).

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GENETIC / RARE DISEASES /

Alliance Sanfilippo http://www.alliancesanfilippo.com President: Karen Aiach

BP 88 92203 Neuilly sur Seine Cedex France

T: 0033-6-14-03-84-87 F: Email: contact@sanfilippo.com

An organisation of parents of children affected by mucopolysaccharide disease type III (Sanfillipo syndrome - MPSIII). Aims to accelerate the pace of biomedical research in MPSIII, and raises money to fund high-potential essential MPSIII research (and, ultimately, clinical trials) throughout Europe. Federates and helps MPSIII patients’ families throughout Europe.

“

Pharmaceutical funding: Non-pharma funding: Donations. Number of members: No member associations. Countries of members: Number of full-time employees: None. Number of volunteers: -

“

Geographic remit: Europe. Annual funding / income (most recent): -

We have a dream: finding a cure. For this reason, we are committed to work intensively, and combine researchers’ involvement, biotech’s professionalism, and families’ energy. We have also committed ourselves to create and maintain a daring culture, to organise any partnership that may have positive results for our children.

Affiliations: Global Organisation for Lysosomal Diseases (GOLD).

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NEUROLOGICAL CONDITIONS / DEMENTIA

Alzheimer Europe (AE) http://www.alzheimer-europe.org Executive Director: Jean Georges

145 route de Thionville 2611 Luxembourg

T: 00352-29-79-70 F: 00352-29-79-72 Email: info@alzheimer-europe.org

Represents the interests of people with dementia and their carers towards the European institutions. Publishes a monthly e-mail newsletter, the Dementia in Europe Magazine, and the Dementia in Europe Yearbook.

“

Alzheimer Europe defines its mission as improving the access of people with dementia and their carers to care services and treatment options.

Geographic remit: Europe. Annual funding / income (most recent): €949,000 (2008). Pharmaceutical funding: EFPIA; Eli Lilly; Janssen-Cilag; Lundbeck; Merck Sharp & Dohme; Novartis; Pfizer; PhRMA; Wyeth (2008). GSK points out that its 2008 donation of €40,000 represented 4% of the organisation’s revenue that year. Non-pharma funding: Corporate sponsors [including, in this instance, branded pharma companies] (26%); European Commission (29%); member organisations (16%); project participation and partner organisations (16%); publications, conference registrations and other services (4%); other income (9%). Number of members: Patient groups from 31 European countries. Countries of members: Austria, Belgium, Bulgaria, Croatia, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Iceland, Ireland, Italy, Luxembourg, Malta, Netherlands, Norway, Malta, Norway, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK. Number of full-time employees: 5. Number of volunteers: 12 Board members; representatives from national organisations. Affiliations: European Patients’ Forum (EPF).

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BLOOD DISORDERS /

AntiCoagulation Europe (ACE) http://www.anticoagulationeurope.org Director: Eve Knight

PO Box 405 Bromley Kent BR2 9WP UK

T: 0044-(0)20-8289-6875 F: 0044-(0)20-8464-2417 Email: anticoagulation@ntlworld.com

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.

“

There is a need for more patient information for people on oral anticoagulation therapy. ACE enables people to access advice, information, and support that—up to now— may have been difficult to find.

Geographic remit: Europe. Annual funding / income (most recent): £65,000 [approximately €76,000] (2007). Pharmaceutical funding: Roche. Non-pharma funding: Broad base of sponsors and regular donors. Advertising and subscription receipts. Number of members: 3. Countries of members: France, Ireland, UK. Number of full-time employees: None. Number of volunteers: All staff are volunteers. Affiliations: -

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HEART DISEASE / CIRCULATORY /

Arrhythmia Alliance (A-A) http://www.arrhythmia-europe.eu Founder and Chief Executive: Trudie Lobban

Unit 2, The Granary Ettington Business Park Stratford upon Avon Warwickshire, CV37 8BT UK

T: 0044-(0)1789-450-787 F: 0044-(0)1789-450-682 Email: trudie@stars.org.uk

A coalition of patients, carers, patient groups, medical and healthcare professionals, medical groups, charitable organisations and allied professionals. The work of A-A is endorsed by the UK’s Department of Health.

“

Arrhythmia Alliance, through its alliances and supporters, works to promote timely and effective diagnosis of heart arrhythmias.

Geographic remit: Europe. Annual funding / income (most recent): £856,000 [approximately €1m] (2007). Pharmaceutical funding: No pharmaceutical industry funding. Non-pharma funding: Grants from several foundations and the UK Department of Health. Donations; legacies; trading. Number of members: Member associations from 4 European countries. Countries of members: Belgium, Portugal, Sweden, UK. Number of full-time employees: 10. Number of volunteers: 5. Affiliations:-

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DISABILITY / EQUITY

Association for Research and Training on Integration in Europe (ARFIE) http://www.arfie.info President: Raymond Ceccotto c/o APEMH-Euroformat Square Ambiorix 32 bte 47 1000 Brussels Belgium

T: 0032-(0)2-230-66-93 F: 0032-(0)2-230-05-60 Email: apemh-euroformat@skynet.be

A 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).

“

ARFIE aims to see improvements in support and quality of life for people with an intellectual disability, the inclusion of people with a disability in society and in the labour market, and lifelong autonomy for people with a disability.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: EU programmes; membership fees. Number of members: 65 members (not all of which are patient groups) from 17 European countries. Countries of members: Austria, Belgium, Cyprus, Czech Republic, Denmark, Finland, France, Germany, Greece, Ireland, Italy, Luxembourg, Malta, Netherlands, Portugal, Romania, UK. Number of full-time employees: Number of volunteers: Affiliations: European Disability Forum (EDF).

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CANCER /

Association of European Cancer Leagues (ECL) http://www.europeancancerleagues.org Director: Dr Wendy Tse Yared

479 Chaussée de Louvain 1030 Brussels Belgium

T: 0032-2-256-20-00 F: 0032-2-256-20-03 Email: info@europeancancerleagues.org

Facilitates the exchange of best practices among members. Promotes capacity building by organising working groups. Influences the EU agenda on oncology topics through lobbying.

“

We advocate a healthy lifestyle for all European citizens, and work to enhance access to cancer screening programmes.

Geographic remit: Europe. Annual funding / income (most recent): €150,000. Pharmaceutical funding: Novartis; Pfizer. Non-pharma funding: Garnier-L’Oréal. Number of members: 27 leagues from 19 European countries. Countries of members: Belgium, Cyprus, Czech Republic, Denmark, Finland, Greece, Hungary, Iceland, Ireland, Italy, Luxemburg, Netherlands, Portugal, Romania, Slovakia, Slovenia, Switzerland, Turkey, UK. Number of full-time employees: 2. Number of volunteers: No volunteers work directly for the ECL. However, many volunteers work for its member national organisations (ECL estimates up to 500,000 volunteers throughout Europe). Affiliations: European Public Health Alliance (EPHA).

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GASTRO-INTESTINAL /

Association of European Coeliac Societies (AOECS) http://www.aoecs.org Senior member of staff: Jean-Louis Kieffer

c/o Jean-Louis Kieffer 34 rue de Bonneville 5950 Itzig Luxembourg

T: 00352-366-114 F: 00352-366-114 Email: board@aoecs.org

The umbrella organisation of European coeliac societies. Co-ordinates and encourages cross-border activities and matters of common interest to members, and promotes the exchange of information among members for the benefit of Europeans affected by coeliac disease or dermatitis herpetiformis. Participates in scientific research.

“

Our most important aim is making coeliac disease better known in Europe. AOECS has been promoting International Coeliac Day since 2006. This day was conceived to increase awareness of the condition among both the general public and the medical profession.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Membership fees from national coeliac associations. Number of members: 29 member societies from 26 European countries. Countries of members: Andorra, Austria, Belgium, Croatia, Czech Republic, Denmark, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Luxembourg, Malta, Netherlands, Norway, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK. Number of full-time employees: None. Number of volunteers: All staff act on a voluntary basis. Affiliations: -

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REPRODUCTIVE / SEXUAL HEALTH /

ASTRA Network (Central and East European Women’s Network for Sexual and Reproductive Health and Rights)

http://www.astra.org.pl Coordinator: Wanda Nowicka ASTRA Secretariat Federation for Women and Family Planning Nowolipie 13/15 00-150 Warsaw Poland

T: 0048-22-635-93-95 F: Email: info@astra.org.pl / federa@astra.org.pl

A regional network of NGOs and individuals. Works for the advancement of sexual and reproductive rights as fundamental human rights, and advocates for their observance, prioritisation and implementation, both nationally and internationally.

“

The ASTRA network is constantly expanding, with very active participation in international projects related to the promotion and monitoring of reproductive health (RH).

Geographic remit: Central and Eastern Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Grant from Population Action International (PAI) and the United Nations Population Fund (UNFPA); individual giving; US private foundations. Number of members: 11 member organisations from 9 European countries. Countries of members: Albania, Bulgaria, Croatia, Latvia, Lithuania, Macedonia, Moldova, Poland, Romania. Number of full-time employees: Number of volunteers: Affiliations: -

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LEARNING DISABILITY /

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

Rue Montoyer 39 1000 Brussels Belgium

T: 0032-(0)2-675-75-05 F: 0032-(0)2-675-72-70 Email: secretariat@autismeurope.org

The only 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 decisionmakers on all issues relating to autism.

Geographic remit: Europe.

“

The engagement of A-E in defending the rights of people with autism-spectrum disorder, even by means of legal instruments (such as the collective complaint against France brought before the Council of European Committee of Social Rights), has been widely recognised by European institutions.

Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Donations; magazine subscriptions; membership fees; some funding from the European Commission. Number of members: Over 80 member associations from 27 European countries. Countries of members: Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Ireland, Italy, Luxembourg, Macedonia, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Spain, Sweden, Switzerland, Turkey, UK. Number of full-time employees: 6. Number of volunteers: 37-member Council of Administration. Affiliations: European Disability Forum (EDF); Platform of European Social NGOs (Social Platform).

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GENETIC / RARE DISEASES /

Barth Syndrome Trust (BST) http://www.barthsyndrome.org.uk Chair: Michaela Damin

1 The Vikings Romsey Hampshire, SO51 5RG UK

T: 0044-(0)-1794-518-785 F: 0044-(0)-8707-066-360 Email: info@barthsyndrome.org.uk

Raises awareness about Barth syndrome among the medical community. Helps affected families. Supports research into treatments and a cure.

“

The BST looks to the saving of lives through education, through advances in treatment, and the pursuit of a cure for Barth syndrome.

Geographic remit: Europe. Annual funding / income (most recent): £13,000 [approximately €14,000]. Pharmaceutical funding: Non-pharma funding: Receives no government funding, and is supported by voluntary donations. Number of members: No member organisations. 130 member families from 9 European countries. Countries of members: Austria, Belgium, Czech Republic, France, Germany, Italy, Netherlands, Portugal, UK. Number of full-time employees: None. Number of volunteers: 20. Affiliations: Barth Syndrome Foundation (USA); Children's Heart Federation (CHF); Contact A Family; Genetic Interest Group (GIG); Rare Disease UK.

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CIVIC / CONSUMER WITH INTEREST IN HEALTHCARE /

BEUC (The European Consumers’ Organisation) http://www.beuc.eu Director General: Monique Goyens

Rue d'Arlon, 80 Bte 1 B-1040 Brussels Belgium

T: 0032-2-743-15-90 F: 0032-2-740-28-02 Email: consumers@beuc.eu

A 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. Major areas of activity includes advocating for healthy diets and food products in Europe.

“

More and more patients want to be involved and actively participate in decisions regarding their health.

Geographic remit: Europe. Annual funding / income (most recent): €3.3m (2007), according to the ETI Register. Pharmaceutical funding: None. BEUC states that it does not receive any funding from companies. Non-pharma funding: According to the ETI Register: €1.9m from the European Commission in 2007, and €1.3m from membership contributions. Number of members: 43 independent national consumer organisations from 31 European countries. Countries of members: Austria, Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Luxembourg, Macedonia, Malta, Netherlands, Norway, Portugal, Poland, Romania, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK. Number of full-time employees: Around 35. Number of volunteers: None. Affiliations: Consumers International (CI).

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NEUROLOGICAL / FAMILIES AND HEALTH

Brain Injured and Families European Confederation (BIF) http://www.bif-ec.eu Secretary General: Gérard Gueneau

28 Avenue du Parc de Procé 44100 Nantes France

T: 0033-240-73-27-42 F: Email: gueneau.gerard@orange.fr

Links European national associations of families of people who have suffered a brain injury. 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.

“

The BIF aims to have brain injury recognised as a specific handicap in each European country.

Geographic remit: Europe. Annual funding / income (most recent): €3,500. Pharmaceutical funding: Non-pharma funding: Subscriptions. Number of members: 17 national associations from 17 European countries. Countries of members: Austria, Belgium, Czech Republic, Denmark, Finland, France, Germany, Iceland, Ireland, Italy, Netherlands, Poland, Slovenia, Spain, Sweden, Switzerland, UK. Number of full-time employees: None. Number of volunteers: One or two per association. 10-member Board of Directors. Affiliations: European Disability Forum (EDF).

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NEUROLOGICAL CONDITIONS / CONGENITAL

Cerebral Palsy-European Communities Association (CP-ECA) http://www.icps.org.uk Secretary General: Aimo Strömberg

c/o Suomen CP-liitto Malmin kauppatie 26 00700 Helsinki Finland

T: 00358-400-421-652 F: Email: aimo.stromberg@cp-liitto.fi

Founded in 1969 as the European arm of an internationally-run self-help group, the International Cerebral Palsy Society (ICPS, a UK-based charity).

“

Although great advances have been made in the social acceptance and development of services for people with CP (and their families) in many countries, others still lag behind, or have not yet even reached the starting post. Levels of understanding and capability vary enormously from country to country. There is no set pattern of development, and the outcome is often unpredictable.

“

Geographic remit: Europe (and international). Annual funding / income (most recent): £13,000 [approximately €14,000] for the International arm of the Association (2007-2008). Pharmaceutical funding: Non-pharma funding: Membership fees; funding from EU institutions, private companies, and international agencies (on a project-by-project basis). The Slot Machine Association of Finland (RAY). Number of members: 12 member organisations from 12 European countries (plus members from nonEuropean countries). Countries of members: Belgium, Denmark, Finland, Germany, Greece, Netherlands, Norway, Portugal, Spain, Sweden, Turkey, UK. Number of full-time employees: 1. Number of volunteers: Affiliations: European Disability Forum (EDF).

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PUBLIC HEALTH /

Club Européen de la Santé (CES) http://www.clubeuropeendelasante.org Secretary General: Dr Jean-Pierre Deshons

49 rue Galilée 75116 Paris France

T: 0033-(0)1-53-32-76-76 F: 0033-(0)1-53-32-76-70 Email: club@clubeuropeendelasante.org

A non-profit association committed to developing health promotion, and to encouraging individuals to take responsibility for their own health. Helps companies promote healthy behaviours in the workplace.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Membership fees. Number of members: Countries of members: Number of full-time employees: Number of volunteers: 12-member Board. Affiliations: -

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CANCER /

CML Advocates Network http://www.cmladvocates.net Co-Founders and Moderators: Sandy Craine (UK), Jan Geissler (DE), Jana Pelouchová (CZ), Giora Sharf (IL)

Am Rothenanger 1b D-85521 Riemerling Germany

T: 0049-89-6283-6807 F: 0049-89-6283-6808 Email: info@cmladvocates.net

A virtual, internet network for leukaemia (mainly chronic myeloid leukaemia, CML) patient organisations. Provides a web directory of 38 CML patient groups worldwide. Acts as a web-based collaboration platform for CML patient advocates to share best practice on cancer patient advocacy.

“

The Network is a web-based directory and a selfmoderated platform for knowledge sharing and coordination, not an organisation representing patients or campaigning by itself.

Geographic remit: Worldwide (founded in Europe). Annual funding / income (most recent): €300. Pharmaceutical funding: None. Non-pharma funding: Member patient groups. Number of members: 39 patient groups (of which 17 are from EU Member States). Countries of members: Number of full-time employees: None. Number of volunteers: 4. Affiliations: -

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AUTO-IMMUNE / IMMUNE DISEASES / YOUNG PEOPLE

Coeliac Youth of Europe (CYE) http://www.cyeweb.eu No named contact person.

c/o Deutsche Zöliakie-Gesellschaft Filderhauptstrasse 61 70599 Stuttgart Germany

T: 0049-(0)711-45-99-81-0 F: Email: Website to be used for email contact

An 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 information on gluten-free food in Europe. Cooperates with other organisations. CYE representatives join each other at an annual meeting.

Geographic remit: Europe. Annual funding / income (most recent): -

“

CYE is an international forum for raising awareness, exchanging knowledge, and working together for a better future. The CYE vision is to improve the living conditions of young people with coeliac disease.

Pharmaceutical funding: Non-pharma funding: Association of European Coeliac Societies (AOECS); various youth and European funding programmes; Karolinska Institutet King Gustav V 80-year Foundation. Number of members: 4 youth societies from 4 European countries. Countries of members: Finland, Norway, Spain, Sweden. Number of full-time employees: None. Number of volunteers: 30 (though the number varies from year to year). All CYE participants are volunteers. Affiliations: Association of European Coeliac Societies (AOECS); European Youth Forum (EYF).

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FAMILIES AND HEALTH /

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

T: 0032-2-511-41-79 F: 0032-2-514-47-73 Email: secretariat@coface-eu.org

An international, pluralistic, not-for-profit, voluntary organisation that promotes family policy, solidarity between generations, and the interests of children within the European Union. Links together general and single-issue national family organisations.

“

COFACE gives a Community-level voice to family organisations operating in the consumer field. Our work in the area of health includes access to healthcare; health determinants (interpretation and prevention); patients’ rights; health and life-styles; nutrition; alcohol; mental health; and the role of the media.

Geographic remit: Europe. Annual funding / income (most recent): €464,000 (2008), according to the ETI Register. Pharmaceutical funding: Non-pharma funding: According to the ETI Register: €378,000 from the European Commission in 2008, €67,000 from membership contributions, and €19,000 from other sources. Number of members: 53 member organisations from 20 European countries. Countries of members: Austria, Belgium, Bulgaria, Cyprus, Czech Republic, Denmark, Finland, France, Greece, Hungary, Ireland, Italy, Lithuania, Luxembourg, Poland, Portugal, Romania, Slovakia, Slovenia, Spain. Number of full-time employees: 5. Number of volunteers: Affiliations: European Brain Injury Society (EBIS); European Disability Forum (EDF); Platform of European Social NGOs (Social Platform).

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INFECTIOUS /

Confederation of Meningitis Organisations (COMO) http://www.comoonline.org Executive Director: Daphne Holt

c/o Telethon Institute of Child Health Research Perth Western Australia

T: F: Email: dholt2@wanadoo.fr

Committed to the elimination of meningitis and septicaemia. Runs a support project that focuses on activities to help members grow and develop within their communities. Its small grants programme allows members to raise their profile and their ability to promote awareness of meningitis and septicaemia to people at risk. CoMO’s advocacy initiative documents members’ advocacy successes for sharing with the rest of the membership.

“

CoMO supports the fight against meningitis by emphasising the burden of the disease, and supporting the establishment of new meningitis and children's health organisations.

Geographic remit: Worldwide (Europe is a region within the organisation). Annual funding / income (most recent): Pharmaceutical funding: 2009 sponsors: GSK; Novartis; Wyeth Pharmaceuticals. Non-pharma funding: Number of members: 9 member associations from 6 European countries. Countries of members: France, Ireland, Italy, Spain, Sweden, UK. Number of full-time employees: Number of volunteers: Affiliations: -

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CANCER /

CONTICANET http://www.conticanet.eu Project Manager: Emmanuelle Da Silva

c/o ARTTIC International Management Services 58A rue du Dessous des Berges 75013 Paris France

T: 0033-1-53-94-54-60 F: 0033-1-53-94-54-70 Email: dasilva@arttic.fr

A network of research organisations that aims to overcome difficulties in the understanding, diagnosis, and management of connective tissue cancers. Liaises with regulatory bodies and health organisations to ensure that new diagnostic and therapeutic tools are rapidly distributed. Runs an annual patient group workshop, and has developed a European-wide sarcoma patient initiative.

“

CONTICANET aims to increase efficient interactions between patient advocacy groups and researchers in the field of connective tumours, through communication, and by the definition of common goals and strategies.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: European Commission. Number of members: A consortium of 19 partner organisations. Links with 17 patient groups from 11 European countries. Countries of members: Patient group contacts in Belgium, France, Germany, Hungary, Italy, Netherlands, Norway, Poland, Romania, Switzerland, UK. Number of full-time employees: 3 at the Network office. Number of volunteers: None. Affiliations: -

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ADDICTION / EQUITY

Correlation (European Network Social Inclusion and Health) http://www.correlation-net.org Project Co-ordinators: Katrin Schiffer and Eberhard Schatz

c/o De Regenboog Groep Stadhouderskade 159 1074 BC Amsterdam The Netherlands

T: 0031-20-672-11-92 F: 0031-20-671-96-94 Email: info@correlation-net.org

Aims to tackle health inequalities, and to improve prevention, care and treatment services among people vulnerable to, and at high risk of, HIV/AIDS and hepatitis C (particularly drug users, young people, and sex workers).

“

Correlation reviews good practice, implements field testings, develops guidance documents and training modules, supports the capacities of health-service providers, and formulates policy recommendations to influence policy agenda.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: European Commission; Open Society Institute. Number of members: 59 organisations from 26 European countries. Countries of members: Austria, Belgium, Bulgaria, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Lithuania, Luxembourg, Netherlands, Norway, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK. Number of full-time employees: 2. Number of volunteers: None. Affiliations: -

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GENETIC / RARE DISEASES /

Cystic Fibrosis Europe (CF Europe; CFE) http://www.cfww.org/cfe President and Secretary, respectively: Karleen DeRijcke and Birgit Dembski

c/o Mukoviszidose In den Dauen 6 53117 Bonn Germany

T: 0032-2-675-57-69 / 0049-391-40-82-32-55 F: 0049-228-98-780-77 Email: BDembski@muko.info

Federation of national European cystic fibrosis associations (and a subdivision of Cystic Fibrosis Worldwide). CF Europe promotes appropriate medical care for cystic fibrosis patients everywhere in Europe, represents and defends the interests of CF patients and their families in all walks of life, and raises public awareness and understanding of the concerns of CF patients and their families.

“

CF Europe aims to see improvements in quality of life for people with this, the most frequently-occurring life-threatening genetic disease in Europe.

Geographic remit: Mainly Europe. Annual funding / income (most recent): €9,000. Pharmaceutical funding: None. Non-pharma funding: Donations by national CF associations. Number of members: 31 member associations from 28 European countries. Countries of members: Albania, Austria, Belgium, Bulgaria, Croatia, Czech Republic, Denmark, Estonia, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Luxembourg, Macedonia, Netherlands, Norway, Poland, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland. Number of full-time employees: None. Number of volunteers: 6 Board members. Affiliations: Cystic Fibrosis Worldwide (CFW); European Organisation for Rare Diseases (EURORDIS).

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CANCER /

Das Lebenshaus (The organisation for patients with rare solid tumours: GIST, sarcomas, kidney cancer)

http://www.daslebenshaus.org Executive Director: Markus Wartenberg Usa-Strasse 1 61231 Bad Nauheim Germany

T: 0049-6032-9492-881 F: 0049-6032-9492-885 Email: info@daslebenshaus.org

Specialises in gastrointestinal stromal tumors (GIST), kidney cancer, and sarcomas. Provides patient information, support and advocacy, encourages research/clinical trials, and increases public awareness of rare cancers.

“

Das Lebenshaus is an information platform for patients and healthcare professionals. Patients, caregivers, medical experts, industry representatives and other stakeholders are working closely and professionally together in the field of rare cancers to achieve the best for the patients and their families.

Geographic remit: German-speaking countries of Europe (close cooperation with equivalent groups elsewhere). Annual funding / income (most recent): €275,000. Pharmaceutical funding: Bayer Healthcare; Novartis; PharmaMar; Pfizer; Roche; Wyeth.

Non-pharma funding: Benevolent activities; donations; grants; membership fees. European Commission. Number of members: 1,200 individual members. Countries of members: Austria, Germany, Switzerland (and other European countries). Number of full-time employees: 2.5. Number of volunteers: Several. Affiliations: European Cancer Patient Coalition (ECPC); Global GIST Network; Sarcoma Patients EuroNet Association.

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GENETIC / RARE DISEASES /

DEBRA International http://www.debra-international.org Treasurer:Rainer Riedl

Am Heumarkt 27/3 1030 Wein Austria

T: 0043-1-876-40-30-0 F: 00-43-1-876-40-30-30 Email: john.dart@debra.org.uk

An umbrella organisation associations representing epidermolysis bullosa (EB).

DEBRA International is active in European disability programmes. The original membership has now grown to cover most of Western Europe, with increasing representation in Central and Eastern Europe.

“

for national people with

Geographic remit: International. Annual funding / income (most recent): €37,000 (plus gifts in kind). Pharmaceutical funding: None. Non-pharma funding: Membership subscriptions and limited corporate donations. Number of members: 22 member organisations from 22 European countries. Countries of members: Austria, Belgium, Bulgaria, Croatia, Czech Republic, Denmark, Finland, France, Germany, Hungary, Ireland, Italy, Netherlands, Norway, Poland, Romania, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK. Number of full-time employees: None. Resources come from member groups. Number of volunteers: Includes a 10-person Executive Committee. Affiliations: European Disability Forum (EDF); European Patients' Forum (EPF).

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DISABILITY /

Disabled Peoples' International-Europe (DPI-EUROPE) http://www.dpi-europe.org President: Jean-Luc Simon

Via Dei Bizantini, 97 88046 Lamezia Terme Catanzaro, Calabria Italy

T: 0039-096-8463-499 F: 0039-096-8463-499 Email: chairperson@dpi-europe.org dpi_europe@dpitalia.org

A network of national organisations or assemblies of people with a disability, established to promote the 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.

“

We in DPI-Europe believe that the people who represent disabled people must be disabled people themselves. Our life experience has shown us that self-representation is the only way forward. It is the time to make our slogan, ‘Nothing about us without us’, a reality in all spheres of life. We must ensure that today’s concept of ‘participation’ becomes a reality tomorrow.

Geographic remit: Europe. Annual funding / income (most recent): No specific budget. Pharmaceutical funding: Non-pharma funding: Number of members: National assemblies from 26 European countries. Countries of members: Albania, Belgium, Bulgaria, Croatia, Czech Republic, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Malta, Norway, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Switzerland, Turkey, UK. Number of full-time employees: 1-2. Number of volunteers: 20 to 50, depending on the project. Affiliations: Disabled Peoples International (DPI); European Disability Forum (EDF).

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CIVIC / CONSUMER WITH INTEREST IN HEALTHCARE /

EU Civil Society Contact Group http://www.act4europe.org Coordinator: Laëtitia Sedou

c/o Social Platform 18 Square de Meeus 1050 Brussels Belgium

T: 0032-2-511-17-11 F: 0032-2-511-19-09 Email: coordinator@act4europe.org

Brings together eight NGO sectors—culture, development, environment, human rights, lifelong learning, public health, social, and women. Its ‘Act4Europe’ campaign aims to encourage more active participation of NGOs in the debate on the future of Europes.

“

Together, we work to develop the dialogue between civil-society organisations and EU institutions as an essential part of strengthening participatory democracy.

Geographic remit: Europe. Annual funding / income (most recent): €56,000. Pharmaceutical funding: None. Non-pharma funding: Membership contributions; grants from the King Baudouin Foundation and Charles Stewart Mott Foundation. Number of members: Eight NGO platforms: CONCORD (development); Culture Action Europe (culture); EPHA (public health); EUCIS-LLL (lifelong learning); EWL (women); Green 10 (environment); HRDN (human rights); and Social Platform (social). Countries of members: Mainly Belgium, but members' own groupings cover many more European countries. Number of full-time employees: 1 (part time). Number of volunteers: None. Affiliations: Platform of European Social NGOs (Social Platform).

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DISABILITY /

Eucrea International http://www.eucrea-international.org Secretary General: Peter Radtke

c/o Cemaforre 115 rue de Ménilmontant 75020 Paris France

T: 0033-(0)1-47-97-87-26 F: 0033-(0)1-47-97-27-83 Email: eucrea.international@wanadoo.fr

A non-governmental organisation that promotes equal opportunities in art, culture, and the media for people with a disability. Acts as a European platform of information and exchange. Lobbies on behalf of the issue of culture and disability.

“

EUCREA International aims to promote the issue of ‘Culture and Disability’, and introduce it into the political agendas of various decision-making authorities at the international level—Council of Ministers of Culture of the European Union, European Commission, Disability Intergroup of the European Parliament, Council of Europe, UNESCO, etc.

“

Geographic remit: Europe (and worldwide). Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Membership fees. Number of members: 18 organisations from 10 European countries. Countries of members: Belgium, Denmark, Germany, Finland, France, Greece, Italy, Portugal, Spain, UK. Number of full-time employees: None. Number of volunteers: 7-person Board of Directors. Affiliations: European Disability Forum (EDF).

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HIV / AIDS / PUBLIC HEALTH

Eurasian Harm Reduction Network (EHRN) http://www.harm-reduction.org Director: Raminta Stuikyte

Siauliu Street 5/1-21 Vilnius 01133 Lithuania

T: 00370-5-2691-600 F: 00370-5-2691-601 Email: rhiannonfreeland@ilcuk.org.uk

A network of organisations that supports, develops and advocates for harm-reduction approaches in the fields of drugs, HIV, public health and social exclusion by following the principles of humanism, tolerance, partnership, and respect for human rights and freedoms.

“

Partners with EU and national platforms, societies, and other healthcare stakeholders to raise awareness and help implement change. Supports EU public health policymakers and national governments in designing effective policy/action plans. Assists in organising or co-sponsoring (inter-) national events and conferences, and acts as a source of knowledge..

“

Geographic remit: Central and eastern Europe (and Asia). Annual funding / income (most recent): €550,000. Pharmaceutical funding: Hoffmann-La Roche; Schering Plough. Non-pharma funding: Deutsche Gesellschaft für Technische Zusammenarbeit (GTZ) GmbH [German Agency for Technical Cooperation]; European Commission; Global Fund; International Council of AIDS Service Organizations (ICASO); Open Society Institute; Tides Foundation; UNICEF; United Nations Office on Drugs and Crime (UNODC); WHO-EURO. Number of members: 153 member organisations. Countries of members: In central and eastern Europe: Albania, Bosnia and Herzegovina, Bulgaria, Croatia, the Czech Republic, Estonia, Hungary, Lithuania, Latvia, Macedonia, Poland, Romania, Serbia and Montenegro, Slovakia, Slovenia. Number of full-time employees: 10. Number of volunteers: 12. Affiliations: European Commission’s Civil Society Forum on Drugs and HIV/AIDS in the European Union; International Drug Policy Consortium (IDPC). EUROPEAN PATIENT GROUP DIRECTORY, 2009-2010 © BURSON-MARSTELLER / PATIENTVIEW

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GENETIC / RARE DISEASES /

euro-Ataxia (European Federation of Hereditary Ataxias) http://www.euro-ataxia.eu Secretary-General: Sue Millman

c/o Ataxia UK 9 Winchester House Kennington Park Cranmer Road London, SW9 6EJ, UK

T: 0044-(0)207-582-1444 F: Email: marco.meinders@euro-ataxia.eu

A non-profit organisation formed by national ataxia groups in Europe. Represents people with hereditary ataxias (rare diseases characterised by degeneration of the cerebellum, brain stem, and spinal cord), encourages research into causes and treatments, and campaigns for treatments to be made available.

“

Our members work together to give people with hereditary ataxia as normal a life as possible.

Geographic remit: Europe. Annual funding / income (most recent): Under €50,000. Pharmaceutical funding: Non-pharma funding: Member organisations; voluntary subscriptions. Number of members: 13 member groups from 10 European countries. Countries of members: Finland, France, Germany, Ireland, Italy, Netherlands, Spain, Sweden, Switzerland, UK. Number of full-time employees: None. All directors give time voluntarily. Number of volunteers: 7-person Board. Affiliations: European Organisation for Rare Diseases (EURORDIS); European Federation of Neurological Associations (EFNA).

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ADDICTION /

Eurocare (European Alcohol Policy Alliance) http://www.eurocare.org Secretary General: Mariann Skar

96 Rue des Confédérés 1000 Brussels Belgium

T: 0032-(0)2-736-05-72 / 0032-(0)2-736-39-76 F: Email: info@eurocare.org

An alliance of non-governmental and public-health organisations advocating the prevention and reduction of alcohol-related harm in Europe via effective and evidence -based alcohol policies.

“

Eurocare works with European institutions, Member States and other European countries to recognise and challenge the harm caused by alcohol, and to ensure that issues of alcohol-related harm are included in relevant policy discussions.

Geographic remit: Europe. Annual funding / income (most recent): €216,000. Pharmaceutical funding: None. Non-pharma funding: Member organisations' contributions (staff time or financial), especially Actis of Norway, and the International Organisation of Good Templars (IOGT-NTO) of Sweden. Some funding through projects from the European Commission. Number of members: 50 organisations from 21 European countries. Countries of members: Belgium, Bulgaria, Czech Republic, Denmark, Estonia, Finland, France, Germany, Ireland, Italy, Lithuania, Netherlands, Norway, Poland, Portugal, Slovenia, Spain, Sweden, Switzerland, Turkey, UK. Number of full-time employees: 2. Number of volunteers: Includes a 10-person Board of Directors. Affiliations: European Public Health Alliance (EPHA).

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CARERS /

Eurocarers (The European Organisation for Carers) http://www.eurocarers.org Member and Honorary Secretary, respectively: Sandrina Sangers and Marja Pijl

c/o Mezzo PO Box 179 Bunnik 3980 CD The Netherlands

T: 0031-(0)30-659-22-22 F: 0031-(0)30-659-22-20 Email: enquiries@eurocarers.org

Acts as a network to exchange information of importance to carers, promote awareness of carer issues, influence EU policy on carers, and develop a research agenda. High on the agenda is securing a set of rights for carers.

“

Eurocarers seeks to promote the recognition of carers and carers' interests, and to shape a policy environment across Europe that is more favourable to carers.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: -

Non-pharma funding: Number of members: 31 carers’ organisations and relevant research and development organisations from 16 European countries. Countries of members: Belgium, Czech Republic, Estonia, Finland, France, Germany, Greece, Ireland, Italy, Latvia, Lithuania, Malta, Netherlands, Spain, Sweden, UK. Number of full-time employees: Number of volunteers: Affiliations: -

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CHILDREN /

Eurochild http://www.eurochild.org Secretary General: Jana Hainsworth

Avenue des Arts 1-2 B 1210 Brussels Belgium

T: 0032-(0)2-511-70-83 F: 0032-(0)2-511-72-98 Email: info@eurochild.org

A network of organisations and individuals working in Europe to improve the quality of life of children and young people. Work is underpinned by the principles enshrined in the 1989 UN Convention on the Rights of the Child.

“

Unacceptable levels of poverty and social exclusion are still experienced by children throughout the EU.

Geographic remit: Europe. Annual funding / income (most recent): According to the ETI Register: €556,000 (2008). Pharmaceutical funding: Eurochild states that this section is not applicable to it. Non-pharma funding: According to the ETI Register: €478,000 from the European Commission (DG Employment, Social Affairs and Equal Opportunities) in 2008, and €77,000 from membership fees. Number of members: 93 member organisations from 32 European countries. Countries of members: Albania, Austria, Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Macedonia, Malta, Netherlands, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK. Number of full-time employees: 5. Number of volunteers: Includes 3 volunteers/interns supporting the office staff. Affiliations: European Anti-Poverty Network; Platform of European Social NGOs (Social Platform).

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MENTAL HEALTH / ADDICTION

Euro-Methwork http://www.quest4quality.nl/euromethwork Coordinator: Ernst Buning

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

T: 0031-20-3303-449 F: Email: methwork@q4q.nl

A forum for Europeans active in the field of substitution treatment for heroin addiction— practitioners, researchers, and policymakers, 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 its publications and website, offers training, and conducts advocacy.

“

Opiate dependence exists all across Europe, and causes problems—not only at the level of individual patients and their families, but also for civil society.

Geographic remit: Europe. Annual funding / income (most recent): -

Pharmaceutical funding: BUFA BV; Essex Pharma; Molteni Farmaceutici; Schering-Plough. Non-pharma funding: Amsterdam Municipal Health Service (GGD); Beun de Ronde; European Commission; International Harm Reduction Association (IHRA); Itaca Europe; Quest for Quality BV (Q4Q); Reckitt Benckiser. Number of members: An informal network. Countries of members: Number of full-time employees: 1. Number of volunteers: Affiliations: -

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REPRODUCTIVE / SEXUAL HEALTH /

EuroNGOs (European NGOs for Sexual and Reproductive Health and Rights, Population and Development)

http://www.eurongos.org Coordinator: Mirja Leibnitz Rue Royale 146 1000 Brussels Belgium

T: 0032-2-250-09-62 F: 0032-2-250-09-69 Email: mirja.leibnitz@eurongos.org

A membership-based platform for organisations specialising in sexual and reproductive health and rights (SRHR). Acts as a facilitator for member NGOs to exchange information and experiences in their areas of concern. Highlights the ways in which they are co-operating with advances in SRHR international development.

Geographic remit: Europe (and international).

“

By encouraging collaborative advocacy and joint initiatives and projects, EuroNGOs' members form powerful consortia that advocate the inclusion of sexual and reproductive health and rights in key in European institutions. EuroNGOs will promote the new reproductive health target, ‘to achieve universal access to reproductive health by 2015’, under Millennium Development Goal 5.

Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: John D. and Catherine T. MacArthur Foundation. Membership fees. Number of members: 38 member organisations from 22 European countries. Countries of members: Austria, Belgium, Bulgaria, Cyprus, Denmark, Finland, France, Germany, Hungary, Ireland, Italy, Latvia, Lithuania, Netherlands, Norway, Poland, Portugal, Romania, Spain, Sweden, Switzerland, UK. Number of full-time employees: 2. Number of volunteers: Affiliations: -

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CANCER /

EUROPA DONNA—the European Breast Cancer Coalition (ED) http://www.europadonna.org Executive Director: Susan Knox

Piazza Amendola 3 Milan 20149 Italy

T: 0039-02-3659-2280 F: 0039-02-3659-2284 Email: info@europadonna.org

An independent, non-profit organisation whose members are 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.

“

EUROPA DONNA represents the interests of European women regarding breast cancer to local and national authorities, as well as to institutions of the European Union.

Geographic remit: Europe (as defined by the WHO).

Annual funding / income (most recent): €770,000 (2008). Pharmaceutical funding: AstraZeneca; Eli Lilly Company; F. Hoffmann-La Roche Ltd; Novartis; Pfizer; Schering-Plough. GSK points out that its 2008 donation of €50,000 represented 6% of the organisation’s revenue that year Non-pharma funding: European Commission; European School of Oncology; foundations/non-profits; Krueger & Associates; membership dues; reimbursements and honoraria; various television companies; VZW-BCWG (Vereniging zonder winstoogmerk, Breast Cancer Working Group). Number of members: 43 member groups from 43 counties. Countries of members: All 27 EU Member States. Number of full-time employees: 5. Number of volunteers: Affiliations: European CanCer Organisation (ECCO); European Patients' Forum (EPF); European Public Health Alliance (EPHA). EUROPEAN PATIENT GROUP DIRECTORY, 2009-2010 © BURSON-MARSTELLER / PATIENTVIEW

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CANCER /

Europa Uomo (EUROMO) http://www.europa-uomo.org Secretary: Professor Louis Denis

c/o European School of Oncology (ESO) Via del Bollo 4 20123 Milano Italy

T: 0032-3-338-91-50 F: 0032-3-338-91-52 Email: europauomo@skynet.be

The European advocacy movement for the fight against prostate cancer. A European coalition of patients supporting groups for prostate diseases (in general) and prostate cancer (in particular).

“

EUROMO wants to mobilise the support and solidarity of men throughout Europe to press for better public and professional education, early detection, optimal provision of physical and physiological care, and of treatment for prostate diseases—to raise public awareness of these diseases, and to promote research in this field of medicine.

“

Geographic remit: Europe. Annual funding / income (most recent): €100,000. Pharmaceutical funding: Project support by Novartis; Roche; Sanofi-Aventis. Non-pharma funding: Gifts; grants; membership fees. Number of members: Member organisations from 21 European countries. Countries of members: Austria, Belgium, Cyprus, Czech Republic, Denmark, Finland, France, Germany, Ireland, Italy, Lithuania, Netherlands, Norway, Poland, Portugal, Romania, Slovak Republic, Spain, Sweden, Switzerland, UK. Number of full-time employees: 3. Number of volunteers: 500. Affiliations: European Association of Urology (EAU); European CanCer Organisation (ECCO); European Cancer Patient Coalition (ECPC); European Platform for Patients’ Organisations, Science and Industry (EPPOSI); European School of Oncology (ESO); European Society for Medical Oncology (ESMO); Organisation of European Cancer Institutes (OECI); WorldWide Prostate Cancer Coalition (WWPCC). EUROPEAN PATIENT GROUP DIRECTORY, 2009-2010 © BURSON-MARSTELLER / PATIENTVIEW

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CANCER /

Europacolon http://www.europacolon.com Founder/Director: Jola Gore-Booth

3 Kericuff 22260 Ploezel France

T: [Julia Kennedy] 0044-(0)77-6608-4256 F: 0033-2-96-95-06-30 Email: info@europacolon.com

Raises the profile of colorectal cancer, forms patient advocacy groups throughout Europe to create a colorectal cancer community, and increases awareness of symptoms and prevention of the disease. Campaigns for screening and improved choice and availability of treatment, and partners healthcare professionals in providing further training for the clinical community. Encourages improvements in European standards and in equity of care.

“

Europacolon is committed to preventing deaths from colorectal cancer, and to improving the quality of life and support for people affected by the disease

Geographic remit: Europe. Annual funding / income (most recent): €120,000. Pharmaceutical funding: Merck-Serono; Norgine; Pfizer; Roche; Sanofi-Aventis.

Non-pharma funding: British Airways; Ethicon; Insight; Olympus; Strategis Communications; TCRM. Number of members: 9 affiliate members; 4 associate members; and 3 forthcoming affiliate members from 16 European countries. Countries of members: Austria, Belgium, Bosnia and Herzegovina, Croatia, France, Finland, Germany, Hungary, Italy, Poland, Portugal, Serbia, Slovakia, Slovenia, Spain, UK. Number of full-time employees: All staff are independent consultants. Number of volunteers: Numerous in Europacolon member groups. Affiliations: -

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MENTAL HEALTH / ADDICTION

Europe Against Drugs (EURAD) http://www.eurad.net Secretary General: Anders Ulstein

c/o Actis - Rusfeltets Samarbeidsorgan Torggata 1 0181 Oslo Norway

T: 0047-23-21-45-00 F: 0047-23-21-45-01 Email: anders.ulstein@actis.no / eurad@eurad.se

A volunteer non-profit drug information network and advocacy organisation, promoting the creation of healthy drug-free cultures, but opposing legalisation of drugs. Provides policymakers, the media, and the public with information on drug problems, prevention, treatment and aftercare. Co-operates with like-minded organisations in the preventing of drug abuse.

“

URAD was founded to counteract the increasing illegal drugs market. Europe's growing drug problem can be described as a modern Black Death. In view of the free movement of people and goods, EURAD considers it urgent to unite in a common voice, and to oppose the legalisation propaganda pervading certain European countries.

Geographic remit: Europe (and worldwide). Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Donations; membership fees. Number of members: Networks with 30 affiliate organisations from 11 European countries. Countries of members: Belgium, Finland, France, Italy, Lithuania, Netherlands, Norway, Romania, Sweden, Switzerland, UK. Number of full-time employees: None. Number of volunteers: Affiliations: Conference of Non Governmental Organisations in Consultative Relationship with the United Nations (CONGO); Prevnet (Prevention Network); World Association of NGOs (WANGO).

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HIV / AIDS /

European AIDS Treatment Group (EATG) http://www.eatg.org Executive Director: Koen Block

Place Raymond Blyckaerts 13 1050 Brussels Belgium

T: 0032-2-626-96-40 F: 0032-2-644-33-07 Email: office@eatg.org

Aims to help people with HIV/AIDS achieve the fastest possible access to state-of-the-art medical products, devices, and diagnostic tests that prevent or treat HIV infection, or that improve the quality of life of people living with HIV.

“

EATG has been at the forefront of the development of a civil-society response to the HIV/AIDS epidemic in Europe. It represents and defends the treatmentrelated interests of people living with HIV and AIDS.

Geographic remit: Europe. Annual funding / income (most recent): €771,000. Pharmaceutical funding: Abbott; BMS; Boehringer-Ingelheim; Gilead; GSK; Merck and Co; MSD; Panacos; Pfizer; Roche/Pharmasset; Schering-Plough; Theratechnologies; Tibotec; Virco. Non-pharma funding: European Commission. Number of members: Over 90 individual members from 30 European countries. Countries of members: Albania, Belgium, Bulgaria, Croatia, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Italy, Kosovo, Latvia, Lithuania, Macedonia, Netherlands, Poland, Portugal, Romania, Serbia, Slovakia, Spain, Sweden, Switzerland, UK. Number of full-time employees: 8. Number of volunteers: 92. Affiliations: European Platform for Patients’ Organisations, Science and Industry (EPPOSI); European Public Health Alliance (EPHA). EATG co-chairs the EU Civil Society Forum on HIV/AIDS (CSF), and is a member of the EU Health Policy Forum. EUROPEAN PATIENT GROUP DIRECTORY, 2009-2010 © BURSON-MARSTELLER / PATIENTVIEW

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PUBLIC HEALTH /

European Alliance for Access to Safe Medicines (EAASM) http://www.eaasm.eu Chair: Jim Thomson

Thameside House Hurst Road Hampton Court Surrey, KT8 9AY UK

T: 0044-(0)20-8481-8115 F: 0044-(0)20-8481-8105 Email: enquiries@eaasm.eu

Takes action to improve patient safety. Involved in the anti-counterfeiting activities of the European Commission, European Parliament, EU Member States 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.

“

The EAASM is a pan-European patient-safety alliance campaigning for the exclusion of counterfeit and substandard medicines from the supply chain.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Bayer Healthcare; Boehringer Ingelheim; Eli Lilly & Company; Johnson & Johnson; Nycomed; Pfizer; Wyeth. Non-pharma funding: Aegate; Ahura Scientific; Idis. Number of members: 10 non-funding partner organisations (many of them pan-European patient groups). Countries of members: Number of full-time employees: Number of volunteers: Affiliations: -

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NEUROLOGICAL CONDITIONS /

European Alliance of Neuro-Muscular Disorders Association (EAMDA) http://www.eamda.net Administrative Secretary: Rita Vella c/o MDG Malta 4 Gzira Road Gzira GZR 04 Malta

T: 00356-21-34-66-88 F: 00356-21-31-80-24 Email: ritaborg@euroweb.net.mt

Holds conferences and workshops on the subject of neuro-muscular disorders, and provides member organisations with information about the development and treatment of muscular dystrophy.

“

The EAMDA should strive at being recognised in Brussels as the European representative of all patients with a neuromuscular disorder.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Conference and membership fees. L'Association Française contre les Myopathies (AFM). Number of members: 34 member organisations from 31 European countries. Countries of members: Austria, Belgium, 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, Switzerland, Turkey, UK. Number of full-time employees: Number of volunteers: 7-member Executive Committee. Affiliations: European Disability Forum (EDF); European Federation of Neurological Associations (EFNA); European Organisation for Rare Diseases (EURORDIS); European Patients’ Forum (EPF); European Platform for Patients’ Organisations, Science and Industry (EPPOSI). EUROPEAN PATIENT GROUP DIRECTORY, 2009-2010 © BURSON-MARSTELLER / PATIENTVIEW

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GENETIC / RARE DISEASE /

European Association against Leukodystrophies (ELA) http://www.ela-asso.com Directeur: Jean-Luc Corti

2 rue Mi-les-Vignes BP 61024 54521 Laxou Cedex France

T: 0033-(0)3-83-30-93-34 F: 0033-(0)3-83-30-00-68 Email: ela@ela-asso.com

An association of parents and patients informed and motivated to unite their efforts against 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.

“

ELA's 'Put on your shoes and fight disease' initiative has mobilised the efforts of 2.4 million students and teachers over 15 years. The funds collected are devoted to the fight against leukodystrophy and diseases of myelin.

Geographic remit: Europe. Annual funding / income (most recent): €7.8m (2008). Pharmaceutical funding: Non-pharma funding: In 2008: donations (€6m), especially from the French Ministries of Education and Health, Youth, Sports and Associative Life. Sales of merchandise. Number of members: 3 member organisations from 3 European countries, plus 6 associated myelin projects running in 6 European countries. Countries of members: Austria, Belgium, Denmark, Germany, Italy, Netherlands, Switzerland, UK. Number of full-time employees: 12. Number of volunteers: Members of the public act as volunteer fundraisers. Affiliations: -

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CHILDREN /

European Association for Children in Hospital (EACH) http://www.each-for-sick-children.org Secretary: Dr Peg Belson

Address: London, UK

T: F: Email: pegbelson@hosp.demon.co.uk

Umbrella organisation for member associations involved in the welfare of all children before, during, or after a hospital stay. Its goal is the implementation of the EACH charter, which sets out the rights of children in hospital. Campaigns, and runs conferences.

“

A particular interest for the EACH is the necessity for parents to be closely involved in all elements of children’s healthcare. The EACH’s achievements have been made in spite of EACH being a group of small organisations, with little financial means, no power, and no lobbying abilities.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: -

Number of members: 16 full and associated member organisations from 14 European countries. Countries of members: Austria, Belgium, Czech Republic, Finland, France, Germany, Iceland, Ireland, Italy, Netherlands, Portugal, Sweden, Switzerland, UK. Number of full-time employees: Number of volunteers: Affiliations: -

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PUBLIC HEALTH /

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

T: 0031-20-511-4513 F: 0031-20-511-4510 Email: secretariat@eurosafe.eu.com

A network of injury-prevention champions. Promotes the dissemination of information on injury burden, risks, and good practices to policymakers. Hopes to achieve awareness of the issue of safety among stakeholders, and stronger infrastructures within EU Member States for actions on prevention.

“

EuroSafe wants to achieve a safer life for European citizens. Among our many areas of specialisation are child safety, safety for older people, and consumer safety. ‘Together, we can make a difference.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: European Commission. Co-funding for the Eurosafe’s Child Safety Action Plan from the Health and Environment Alliance (HEAL); UNICEF Innocenti Research Centre; the Universities of Keele and the West of England; and the WHO-European Office. Number of members: Institutional and individual members. Three main partners: European Commission; UNICEF; World Health Organisation. Countries of members: Number of full-time employees: 4. Number of volunteers: Affiliations: -

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DISABILITY /

European Association of Cochlear Implant Users (EURO-CIU) http://eurociu.implantecoclear.org Secretary: Dr Ruud Van Hardeveld

16 rue Emile Lavandier 1924 Luxembourg

T: F: 00352-44-22-25 Email: eurociu@implantecoclear.org

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.

“

The EURO-CIU works towards stronger quality-control procedures for all CI systems (from diagnosis to rehabilitation), and the guarantee of adequate individual rehabilitation.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Advanced Bionics; Cochlear; Ear Foundation; MED-EL; Neurelec. Number of members: National associations or individual members from 20 European countries. Countries of members: Austria, Belgium, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Italy, Luxembourg, Netherlands, Norway, Spain, Sweden, Switzerland, Turkey, UK. Number of full-time employees: Number of volunteers: Affiliations: European Disability Forum (EDF).

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AUTO-IMMUNE / IMMUNE DISEASES /

European Association of Patients Organizations of Sarcoidosis and other Granulomatous Disorders (EPOS) http://www.sarcoidosis.biz No named contact person. Uerdinger Strasse 43, 40668 Meerbusch Germany

T: 0049-(0)-21-50-70-59-670 F: 0049-(0)-21-50-70-59-671 Email: info@sarcoidosis.biz

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. A priority remains the provision of adequate information for people with sarcoidosis.

“

The suffering of the long-term sarcoid patient must be recognised as an unsatisfactory situation. Not only is the cause of the condition unknown, but a medical cure remains undiscovered. EPOS was brought into being to help these patients.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Number of members: 6 national patients’ organisations from 6 European countries. Countries of members: Belgium, Germany, Ireland, Netherlands, Switzerland, UK. Number of full-time employees: Number of volunteers: Affiliations: European Organisation for Rare Diseases (EURORDIS).

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DISABILITY / CARERS

European Association of Service Providers for Persons with Disabilities (EASPD) http://www.easpd.eu Secretary General: Luk Zelderloo Avenue d’Auderghem 63 1040 Brussels Belgium

T: 0032-2-282-46-10 F: 0032-2-230-72-33 Email: info@easpd.eu

Provides members with information and services (including networking and exchange possibilities at European, national, regional and local levels). Works to influence policy, and offers service providers a voice in Europe. Encourages research and development into improvements in service provision.

“

The EASPD represents over 8,000 service-provider organisations across Europe, and across disabilities. One of the main pillars of EASPD is policy impact— giving the sector a political voice at European level.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: European Commission; membership dues; remunerated projects and research work. Number of members: 95 member organisations from 25 European countries. Countries of members: Austria, Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Lithuania, Luxembourg, Macedonia, Moldova, Netherlands, Norway, Portugal, Romania, Slovenia, Spain, Sweden. Number of full-time employees: 6. Number of volunteers: 2. Affiliations: European Citizen Action Service (ECAS); Platform of European Social NGOs (Social Platform).

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DISABILITY /

European Blind Union (EBU) http://www.euroblind.org Secretary General: Birgitta Blokland

58 Avenue Bosquet 75007 Paris France

T: 0033-1-47-05-38-20 F: 0033-1-47-05-38-21 Email: ebu@euroblind.org

One of the World Blind Union’s six regional bodies. Promotes and represents the interests of all blind and partially-sighted people in Europe (including those with additional disabilities) with the goal of achieving their equal rights as citizens, and full participation in society.

Geographic remit: Europe.

“

The EBU is committed to an inclusive Europe for all, in which blind and partiallysighted citizens can participate on an equal basis. To reaffirm this position, the EBU issued a 2009 Declaration to EU decision-makers on behalf of over ten million blind and partially-sighted people in the EU.

Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Care Tec; European Commission; Voice on the Go. Member subscriptions; sponsorship. Number of members: 44 member groups. Countries of members: Members in every European country. Number of full-time employees: 2. Number of volunteers: 8-person Board. Affiliations: European Disability Forum (EDF); Platform of European Social NGOs (Social Platform); World Blind Union (WBU).

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NEUROLOGICAL CONDITIONS /

European Brain Council (EBC) http://www.europeanbraincouncil.org No named contact person.

c/o University Foundation 11, Rue d’Egmont 1000 Brussels Belgium

T: 0032-2-513-27-57 F: Email: info@europeanbraincouncil.org

A coordinating council formed by European organisations interested in neurology, neurosurgery, psychiatry, basic brain research (neuroscience), as well as patient organisations and industry.

“

EBC represents a vast network of patients, doctors and scientists. These stakeholders, along with its industrial partners, make EBC eminently suited to work in close partnership with the European Union Commissions, European Parliament, and World Health Organization (WHO), as well as other decision-making bodies.

“

Geographic remit: Europe. Annual funding / income (most recent): The EBC notes that membership fees and bank interest should provide approximately €250,000 per annum. Funding secured for 2009 projects: €160,000. Pharmaceutical funding: Astra-Zeneca; Eisai; Eli Lilly; Esteve; Genzyme; Nycomed; Organon; Pfizer Germany; Sanofi Aventis; Servier; Solvay; Teva/Lundbeck; UCB. Non-pharma funding: European Commission; Medtronic; member organisations. Number of members: 2 European patient organisations (EFNA and GAMIAN-Europe); 5 European professional organisations (AEP, EANS, ECNP, EFNS, and FENS); elected delegates from industrial partners. Associate members—3 European professional organisations (EACIC, Brains 4 Brain, FEPS). Countries of members: Pan-European. Number of full-time employees: Number of volunteers: 18-person Board. Affiliations: European Coalition for Biomedical Research (ECBR); MRI Alliance.

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NEUROLOGICAL CONDITIONS /

European Brain Injury Society (EBIS) http://www.ebissociety.org Secretary General: Christine De Vrieze

EBIS Secretariat Centre La Braise Rue de La Vigne 56 1070 Brussels Belgium

T: 0032-2-522-20-03 F: 0032-2-523-39-52 Email: ebis.secretariat@skynet.be

A European association dedicated to activities that support traumatic braininjured 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.

“

The EBIS exists thanks to the personal application of members who attach importance to making heard the point of view of people suffering from cranial trauma.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: King Baudouin Foundation. Membership fees. Number of members: 165 individual and institutional members from 15 European countries. Countries of members: Austria, Belgium, Denmark, France, Germany, Greece, Ireland, Italy, Luxembourg, Netherlands, Portugal, Spain, Sweden, Switzerland, UK. Number of full-time employees: Number of volunteers: Affiliations: -

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CANCER /

European CanCer Organisation (ECCO) http://www.ecco-org.eu Chief Executive Officer: Michel Ballieu

Avenue E. Mounier 83 1200 Brussels Belgium

T: 0032-2-775-02-01 F: 0032-2-775-02-00 Email: info@ecco-org.eu

Following the philosophy that every cancer patient deserves the best, ECCO supports and promotes the activities of patient advocates and organisations 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.

Geographic remit: Europe.

“

ECCO exists to uphold the right of all European cancer patients to the best-possible treatment and care. It does this by creating awareness of patients' needs and wishes, encouraging progressive thinking in cancer policy, training and education, and promoting European cancer research.

Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Number of members: 24 member organisations. Countries of members: Number of full-time employees: 22 at headquarters. Number of volunteers: 1,000 (Board members, committee members and speakers). Affiliations: -

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CANCER /

European Cancer Patient Coalition (ECPC) http://www.ecpc-online.org Director: Jan Geissler

Am Rothenanger 1b 85521 Riemerling Germany

T: 0049-(0)89-628-36-807 F: 0049-(0)89-628-36-808 Email: info@ecpc-online.org

Committed to improving cancer prevention, screening, early diagnosis, and best treatment, and to reducing disparity and inequality across the EU. Seeks to ensure that policy-makers, politicians, health professionals, the media and the general public recognise the serious nature of cancer, and the need for ongoing concerted action to reduce unnecessary deaths and suffering. Supports more than 290 member cancer patient groups (most of which are within the EU27) to build capacity in advocacy.

“

Committed to giving cancer patients a voice in Europe. Nothing about us without us!

Geographic remit: Mainly Europe.

Annual funding / income (most recent): €445,644 (2008). Pharmaceutical funding: 11 sustaining partners (including GSK, which gave the ECPC €50,000 in 2008— 11% of the organisation’s income, according to GSK). Non-pharma funding: Research funding from EU projects. Number of members: Approximately 300 member organisations from over 40 countries. Countries of members: All of the EU27 countries, plus mainly neighbouring/candidate countries of the EU, and 14 other countries. Number of full-time employees: 1 full-time and 1 part-time. Number of volunteers: 9. Affiliations: European Platform for Patients’ Organisations, Science and Industry (EPPOSI).

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CANCER /

European Cervical Cancer Association (ECCA) http://www.ecca.info Director General: Philip Davies

121 Rue Jourdan Boite 6 1060 Brussels Belgium

T: 0032-2-538-2833 F: 0032-2-538-5833 Email: info@ecca.info

Works to raise awareness of cervical cancer and how it can be prevented. Has developed and implemented a standardised, evidence-based public-health education programme aimed at the general public, medical professionals, and public-health officials. Organises annual European awareness-raising events (such as the Cervical Cancer Prevention Week) and political advocacy events (such as the European Cervical Cancer Summit Meeting).

Geographic remit: Europe.

“

The greatest tragedy with cervical cancer is that the majority of cases in Europe could be prevented through organised prevention programmes that effectively combine screening with vaccination against the human papilloma virus (HPV). And yet, this disease remains a significant source of disease and death in Europe.

Annual funding / income (most recent): €500,000. Pharmaceutical funding: Novartis; Pfizer; Sanofi Pasteur MSD. GSK points out that its 2008 grant of €150,000 represented 23% of the organisation’s revenue that year. Non-pharma funding: Donations from the general public; public-sector grants (European and national); sales of the Pearl of Wisdom. Number of members: 150 institutional members. Countries of members: All of the countries of Europe. Number of full-time employees: 5. Number of volunteers: 250. Affiliations: -

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GENETIC / RARE DISEASES /

European Chromosome 11q Network (11q Network)

http://www.chromosome11.eu General Secretary: Tom Birle

Ahornstrasse 13 85241 Hebertshausen Germany

T: 0049-813-127-3387 F: 0049-813-127-3545 Email: familybirle@aol.com

A network of families with children who have anomalies on the long arm of chromosome 11 (11q). Enables parents to make contact, and information to be collected and exchanged. Follows and supports scientific developments regarding chromosome 11q disorders.

“

The 11q Network runs an online discussion forum that has been warmly appreciated by the membership community.

Geographic remit: Europe. Annual funding / income (most recent): Under €50,000. Pharmaceutical funding: Non-pharma funding: Donations; membership fees. Number of members: Around 80 families. Countries of members: Number of full-time employees: None. Number of volunteers: Affiliations: European Organisation for Rare Diseases (EURORDIS).

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DISABILITY /

European Coalition for Community Living (ECCL) http://www.community-living.info Coordinator: Ines Bulić

c/o National Centre for Independent Living Unit 3.40, Canterbury Court 1-3 Brixton Road London, SW9 6DE UK

T: 0044-(0)20-7587-3982 F: 0044-(0)20-7582-2469 Email: coordinator@community-living.info

A cross-disability initiative that works towards the social inclusion of people with a disability by promoting the provision of high-quality, comprehensive, community-based services as an alternative to institutionalisation. Encourages good practice in community living, and engages in monitoring and advocacy activities at European level.

Geographic remit: Europe.

“

ECCL would like to highlight its continuing lobbying activities at the European level—primarily at the European Commission, the European Parliament, and the Council of Europe. At ECCL, we believe it is important to show decisionand policy-makers at European level (and in the EU’s different countries) that quality community-based services for people with a disability must be developed as a matter of priority.

Annual funding / income (most recent): Pharmaceutical funding: None. Non-pharma funding: Member organisations; Open Society Mental Health Initiative (OSMHI); Socires. Number of members: 50 member organisations from 21 European countries. Countries of members: Austria, Belgium, Bosnia and Herzegovina, Bulgaria, Croatia, Czech Republic, Estonia, Finland, Germany, Greece, Hungary, Ireland, Kosovo, Latvia, Macedonia, Moldova, Netherlands, Romania, Serbia, Slovakia, UK. Number of full-time employees: 1. Number of volunteers: Affiliations: European Network on Independent Living (ENIL).

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HIV / AIDS /

European Coalition of Positive People (ECPP) http://www.ecpp.co.uk Executive Director: Colin Webb

2 Whitehorse Mews Westminster Bridge Road London, SE1 7QD UK

T: 0044-(0)20-7401-9942 F: 0044-(0)20-7401-9690 Email: office@ecpp.co.uk

A patient group that represents people living with HIV in the EU, ECCP is a coalition of people living with HIV and hepatitis infection in the EU. Seeks to establish a democratic and accountable patient voice at European level, and is actively involved in a number of issues of importance to patients within the EU.

“

ECPP works in Europe to promote patient involvement in the development of public policy, and in the delivery and monitoring of services. Where appropriate, ECPP helps to build networks of people living with HIV and AIDS.

Geographic remit: Europe (and several African countries). Annual funding / income (most recent): £403,000 [approximately €458,000] (2007). Pharmaceutical funding: Abbott Laboratories; Bristol-Myers Squibb; EFPIA; F. Hoffmann-La Roche; F. Hoffmann-La Roche employees; Merck Sharp & Dohme; Pfizer; Pfizer Foundation. GSK points out that its 2008 donation of €20,000 represented 3% of the organisation’s revenue that year. Non-pharma funding: Comic Relief; Elton John AIDS Foundation; World Health Organisation (WHO). Number of members: None. Countries of members: Number of full-time employees: 6. Number of volunteers: Volunteers are essential for ECCP activities. Affiliations: European Patients' Forum (EPF).

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CIVIC / CONSUMER WITH INTEREST IN HEALTHCARE / PUBLIC HEALTH

European Community of Consumer Co-operatives (EURO COOP) http://www.eurocoop.coop Secretary General: Rodrigo Gouveia

Avenue de Tervueren 12, bte3 B-1040 Brussels Belgium

T: 0032-2-285-00-70 F: 0032-2-231-07-57 Email: info@eurocoop.coop

Represents to EU institutions the interests of consumer cooperatives and their 23 million consumer-members across 17 European countries. Operates in consumer food policy, environmental and ethical policy, and co-operative enterprises policy.

Geographic remit: Europe.

“

European citizens must be listened to, not only through the representative democracy, but also through organised civil society. The Euro Coop has made its expertise available to the European institutions for the promotion of consumer interests.

Annual funding / income (most recent): €430,000 (2008), according to the ETI Register. Pharmaceutical funding: Non-pharma funding: According to the ETI Register: €430,000 from membership contributions in 2008. Number of members: 17 member groups from 17 European countries. Countries of members: Bulgaria, Cyprus, Czech Republic, Denmark, Estonia, Finland, Germany, Hungary, Italy, Netherlands, Norway, Portugal, Romania, Slovakia, Spain, Sweden, UK. Number of full-time employees: 6. Number of volunteers: Affiliations: Cooperatives Europe (International Cooperative Alliance-European region).

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NEUROLOGICAL CONDITIONS /

European Concerted Action and Research in Epilepsy (EUCARE) http://www.eucare.org Executive Director: Ann Little

11 Priory Hall Stillorgan Dublin 18 Ireland

T: 00353-1-123-456 F: 00353-1-987-654 Email: ibedublin@eircom.net

A joint initiative of the International League Against Epilepsy, the International Bureau for Epilepsy, and UCB Pharma. Aims to raise the profile of epilepsy across Europe through research and political activities. Has set a major goal of promoting epilepsy as a public health priority among governments and health authorities.

“

EUCARE raises the profile of epilepsy across Europe through research and political activities.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: UCB Pharma. Non-pharma funding: Number of members: No formal membership. Countries of members: Number of full-time employees: Number of volunteers: Affiliations: International Bureau for Epilepsy (IBE); International League Against Epilepsy (ILAE).

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CIRCULATORY / HEART DISEASE /

European Congenital Heart Disease Organisation (ECHDO) http://www.echdo.org Spokesperson: Hermine Nock

c/o BVHK Kasinostrasse 66 52066 Aachen Germany

T: 0049-241-912-332 F: Email: hermine.nock@bvhk.de

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.

“

Member organisations share knowledge and experiences, exchange examples of best practice, and provide up-to-date information about congenital heart disease to all affected European people and their families.

Geographic remit: Europe. Annual funding / income (most recent): ECHDO states that it currently has no revenue because it has just been founded. Pharmaceutical funding: Non-pharma funding: Number of members: 31 member groups from 24 European countries. Countries of members: Austria, Belgium, Bulgaria, Cyprus, Czech Republic, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Lithuania, Luxembourg, Netherlands, Norway, Poland, Romania, Slovenia, Spain, Sweden, UK. Number of full-time employees: None. Number of volunteers: 5 board members and volunteers from member organisations. Affiliations: None, though some member organisations are members of the European Organisation for Rare Diseases (EURORDIS).

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DISABILITY /

European Deafblind Network (EDbN) http://www.edbn.org Network Co-ordinator: Ursula Heinemann

EDbN Secretariat c/o Spanish Federation of Deafblindness C/ Joanot Martorell, 25 local 08014 Barcelona Catalonia, Spain

T: F: 0034-93-331-4220 Email: ursiheinemann@usa.net

An organisation that brings together families, professionals and deaf-blind people. It is committed to campaigning to promote the rights and interests of people who are deafblind. Runs an electronic group to share news and information, and to coordinate training and projects of common interest.

“

The EDbN remains an organisation that involves professionals, families, and deafblind people at a European level. In the future, the key will be to work with, and provide opportunities for, networking for parents.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Number of members: 16 member organisations from 12 European countries. Countries of members: Austria, Bulgaria, Denmark, France, Germany, Italy, Netherlands, Slovakia, Slovenia, Spain, Sweden, UK. Number of full-time employees: Number of volunteers: 5 members of the Management Committee. Affiliations: Deafblind International (DBI); European Disability Forum (EDF).

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MENTAL HEALTH /

European Depression Association (EDA) http://www.eddas.org President: Dr Vincenzo Costigliola

Avenue des Mimosas 57 Woluwe Saint-Pierre 1150 Brussels Belgium

T: 0032-(0)2-734-29-80 F: 0032-(0)2-734-21-35 Email: info@eddas.org

Dedicated to raising awareness of depression in Europe by involving interested local organisations and by mobilising the media. Promotes ‘European Depression Day’, an annual initiative aimed at GPs, psychiatrists, other health professionals, patient organisations, and the general public, and which is intended to make everyone more aware of the importance of prevention, early diagnosis, and optimal treatment.

Geographic remit: Europe.

“

We will put depression on the political agenda and draw attention to its impact on the individual, their family, society, and the economy. Through collaborative working, we can maximise resources, react strategically, lobby effectively, and create a better environment for people affected by depression. Only together can we overcome the burden of depression.

Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Centro Studi Psichiatrici; European Medical Association (EMA). Number of members: 8 member organisations (2 of which are patient organisations) from 6 European countries. Countries of members: Patient organisations in France and the UK. Number of full-time employees: None. Number of volunteers: 8 Board members. Affiliations: -

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DISABILITY /

European Disability Forum (EDF) http://www.edf-feph.org Director: Carlotta Besozzi

39-41 Rue du Commerce 1000 Brussels Belgium

T: 0032-2-282-46-00 F: 0032-2-282-46-09 Email: secretariat@edf-feph.org

A democratic organisation that represents over 65 million people with a disability in the EU in dialogue with the European Commission and other European authorities. Seeks to promote equal opportunities for people with a disability, and to advocate for their full access to fundamental and human rights.

“

The EDF works in all fields of EU competence, promoting disability legislation in Europe. We seek as the best way forward comprehensive European legislation that will prohibit all forms of discrimination on the ground of disability, and which will provide effective remedies to discrimination.

Geographic remit: Europe. Annual funding / income (most recent): €1.1m (2007-2008). Pharmaceutical funding: Non-pharma funding: European Commission; membership fees. Number of members: 131 member organisations (plus associate and observer members). Countries of members: All European countries. Number of full-time employees: 9. Number of volunteers: Annual trainee scheme (1-2 trainees per annum). Affiliations: European Women’s Lobby (EWL); International Disability Alliance (IDA); Platform of European Social NGOs (Social Platform).

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GENETIC / RARE DISEASES / CONGENITAL

European Down Syndrome Association (EDSA) http://www.edsa.eu General Secretary: Erik de Graaf

c/o Stichting Down Syndroom Hoogeveenseweg 38 Gebouw U 7943 KA Meppel Netherlands

T: 0031-(0)-522-281-337 F: 0031-(0)-522-281-799 Email: ErikDeGraaf@downsyndroom.nl

A network of associations for Down syndrome in Europe. A major organisational goal is the improvement of the quality of life of people with Down syndrome (and their families). Encourages scientific efforts towards improvements in medical care, education, rehabilitation, vocational training, employment, leisure, and independent living for people with Down syndrome.

“

The EDSA emphasises family support and caring for people with Down syndrome, it promotes access to employment and guidance, and it supports diversity in education initiatives.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Number of members: 37 member organisations from 25 European countries. Countries of members: Austria, Belgium, Bosnia and Herzegovina, Croatia, Cyprus, Czech Republic, Denmark, France, Germany, Greece, Hungary, Ireland, Italy, Luxembourg, Malta, Netherlands, Norway, Poland, Portugal, Romania, Slovakia, Spain, Sweden, Switzerland, UK. Number of full-time employees: Number of volunteers: Affiliations: European Disability Forum (EDF).

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LEARNING DISABILITY /

European Dyslexia Association (EDA) http://www.dyslexia.eu.com President: Michael Kalmár

Address: -

T: F: Email: m.kalmar@utanet.at

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 in their educational social and cultural integration into society.

Geographic remit: Europe.

“

The EDA insists that every child and adult with dyslexia has the right to access appropriate identification, support, and opportunities to achieve their full potential in education, training, employment, and all aspects of life.

Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Membership subscriptions; participation in EU projects. Number of members: 34 member organisations from 24 European countries. Countries of members: Austria, Belgium, Croatia, Cyprus, Czech Republic, Denmark, Finland, France, Germany, Greece, Ireland, Italy, Lithuania, Luxembourg, Malta, Netherlands, Norway, Poland, Portugal, Slovenia, Spain, Sweden, Switzerland, UK. Number of full-time employees: None. Number of volunteers: 7-person Board. Affiliations: European Disability Forum (EDF); in official relations with UNESCO.

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NEUROLOGICAL CONDITIONS /

European Dystonia Federation (EDF) http://www.dystonia-europe.org Executive Director: Alistair Newton

69 East King Street Helensburgh G84 7RE UK

T: 0044-1436-678-799 F: 0044-1436-678-799 Email: sec@dystonia-europe.org

Advocates for dystonia patients and their families at European level.

“

The Federation acts in a co-ordinating role for its member national groups.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Membership fees. Number of members: 18 national organisations from 16 European countries. Countries of members: Austria, Belgium, Croatia, Denmark, Finland, France, Germany, Ireland, Italy, Netherlands, Norway, Portugal, Spain, Sweden, Switzerland, UK. Number of full-time employees: Number of volunteers: Affiliations: European Federation of Neurological Associations (EFNA).

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REPRODUCTIVE / SEXUAL HEALTH /

European Endometriosis Alliance (EEA) http://www.endometriosis.org/eea.html Coordinator: Lone Hummelshoj

T: 0044-(0)77-1006-5164 F: Email: info@endometriosis.org

The EEA states that it is an umbrella “coalition”, and has no formal headquarters (though is based in London, UK).

An alliance for national endometriosis support organisations to collaborate, and to provide an open and pro-active pan-European base from which to help and support the estimated 16 million women in Europe who suffer from endometriosis.

“

Our goal is that the next generation of women will not be at risk of having their lives compromised by endometriosis. Our vision is a future in which millions of women are not prevented from fulfilling their dreams of completing their education, maintaining a career and having children because of a disease which could be prevented—if only adequate funding for research was available.

Geographic remit: Europe. Annual funding / income (most recent): The EEA states that it has no income. Pharmaceutical funding: No pharmaceutical industry funding. Non-pharma funding: Advertisements on the endometriosis.org website (otherwise, no sources of funding). Number of members: 18 member organisations from 14 European countries. Countries of members: Austria, Denmark, Finland, France, Germany, Ireland, Italy, Malta, Netherlands, Norway, Portugal, Spain, Sweden, UK. Number of full-time employees: Number of volunteers: Over 50. Affiliations: -

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FAMILIES AND HEALTH /

European Family Therapy Association (EFTA) http://www.europeanfamilytherapy.eu Head of Secretariat: Fabienne Dardenne

EFTA-CIM 32 avenue du Bois Williame 5101 Erpent Namur Belgium

T: 0032-81-31-04-39 F: 0032-81-31-01-76 Email: efta@scarlet.be

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.

“

Our aim is to maintain connections with each other, and to encourage active contacts with all those interested in the field of family therapy and systemic approach.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Membership contributions. Number of members: 28 member organisations from 27 European countries. Countries of members: Austria, Belgium, Bulgaria, Cyprus, Czech Republic, Denmark, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Macedonia, Malta, Netherlands, Norway, Poland, Portugal, Serbia and Montenegro, Spain, Sweden, Switzerland, Turkey, UK. Number of full-time employees: Number of volunteers: Affiliations: -

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GENETIC / RARE DISEASES /

European Federation for Neurofibromatosis Associations (NF Europe) http://nfeurope.nfkontakt.org/DEFAULT-Template/index.html No named contact person.

Slachthuisstraat 73 9100 Sint-Niklaas Belgium

T: 0032-(0)3-766-13-41 F: Email: info@nfeurope.org

A network of national neurofibromatosis family support groups in Europe. Provides information and support, raises public awareness, and encourages medical research into neurofibromatosis. Develops activities to increase the quality of life of families affected.

“

Our first concern is to offer information in the appropriate languages, including addresses to contact for a chat with people dealing with the same concerns and sorrows (perhaps even in patients' own neighbourhoods). That way, there is no need for patients to feel alone, or to deal with it all by themselves.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: European Commission. Number of members: 23 member associations from 18 European countries. Countries of members: Austria, Belgium, Bulgaria, Denmark, Finland, France, Germany, Ireland, Italy, Netherlands, Norway, Poland, Portugal, Spain, Sweden, Switzerland, Turkey, UK. Number of full-time employees: Number of volunteers: Most of NF Europe’s staff are volunteers. Affiliations: -

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RESPIRATORY /

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

T: 0032-(0)2-227-2712 F: 0032-(0)2-218-3141 Email: info@efanet.org

A European network of national patient associations specialising in asthma, allergy, and chronic obstructive pulmonary disease (COPD). Aims to improve the health and quality of life of Europeans with those diseases. Shares information and experiences, empowering member organisations to seek equity in the way that patients’ interests are served across Europe.

“

The EFA serves the interest of its member organisations on a European level, provides a platform for members to exchange best practices, and offers a framework for capacity building in the fields of allergy, asthma and COPD.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Boehringer Ingelheim; Nigaard Pharma; Novartis. GSK points out that its 2008 grant of €70,000 represented 23% of the organisation’s revenue that year Non-pharma funding: European Commission; Linde Gas. Membership fees. Number of members: 34 member organisations from 20 European countries. Countries of members: Austria, Belgium, Bulgaria, Czech Republic, Denmark, Finland, France, Germany, Greece, Ireland, Italy, Lithuania, Netherlands, Norway, Poland, Portugal, Slovenia, Sweden, Switzerland, UK. Number of full-time employees: 2. Number of volunteers: 4-person Board. Affiliations: European Patients’ Forum (EPF); Health and Environment Alliance (HEAL); International COPD Coalition (ICC).

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FAMILIES AND HEALTH / MENTAL HEALTH

European Federation of Associations of Families of People with Mental Illness (EUFAMI) http://www.eufami.org Secretary General: Kevin Jones Diestsevest 100 3000 Leuven Belgium

T: 0032-16-74-50-40 F: 0032-16-74-50-49 Email: info@eufami.org

Representative body for family and carer associations throughout Europe. Promotes the interests and wellbeing of people with mental illness, and aims to strengthen and assist the efforts of member associations to improve the support, standard of treatment, care, quality of life, and welfare for people with severe and enduring mental illness (and of the members of their families). Enables member associations to combine their efforts, and to act jointly at European level. Defends the human rights, and protect the interests, of people We aim to contribute to removing the stigma surrounding mental with severe and enduring mental illness illness by promoting positive images and their family members.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: AstraZeneca; Eli Lilly and Co; Janssen; Pfizer Inc. Non-pharma funding: Number of members: 47 national and regional member organisations from 27 European countries.

and counteracting ignorance and misinformation. We highlight examples of good practice in the field of mental illness, and identify examples of bad practice. We campaign for positive change, and for adequate resources for the health and social care of people with mental illness and their carers.

“

Countries of members: Number of full-time employees: 1. Number of volunteers: Varying numbers. Affiliations: European Disability Forum (EDF); European Patients' Forum (EPF).

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BLOOD DISORDERS /

European Federation of Associations of Patients with Haemochromatosis (EFAPH) http://www.european-haemochromatosis.eu President: Jean Rialland 1 Boulevard Jeanne d’Arc 35000 Rennes France

T: 0033-2-99-87-05-15 F: Email: info@european-haemochromatosis.eu

Dedicated to raising public awareness of the condition, and to emphasising the importance of prevention, family screening, and early treatment. Supplies the medical profession with valuable information on the subject.

“

The EFAPH facilitates the exchange of information between haemochromatosis organisations, and favours awarenessbuilding among the public.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Novartis. Non-pharma funding: Annual membership fees. Number of members: 14 member associations from 14 European countries. Countries of members: Belgium, France, Germany, Hungary, Iceland, Ireland, Italy, Netherlands, Norway, Poland, Portugal, Spain, Sweden, UK. Number of full-time employees: Number of volunteers: Affiliations: European Organisation for Rare Diseases (EURORDIS); European Patients’ Forum (EPF).

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GASTRO-INTESTINAL /

European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA) http://www.efcca.org Secretary: Chayim Bell EFCCA Secretariat Groningenstraat 54 Alphen a/d Rijn 2408GM Netherlands

T: 0031-172-496-703 F: 0031-172-496-859 Email: secretariat@efcca.org

Aims to improve the wellbeing of the 1.2 million Europeans with Crohn’s and colitis by working with national member associations, facilitating information exchange, promoting cross-border activities, and encouraging scientific research. Provides a patient perspective to European healthcare professionals and stakeholders.

“

The 2008-2013 health strategy of DG SANCO (Directorate General for Health and Consumer Protection) perfectly fits with EFCCA’s mid-term objectives and expectations—particularly regarding the active and protagonist role of members as patients and ‘experts’ on healthcare issues. EFCCA’s member associations represent more than 90,000 patients, relatives and friends throughout Europe.

Geographic remit: Europe.

Annual funding / income (most recent): Pharmaceutical funding: Abbott; Centocor Ortho Biotech Inc; Élan Corporation; Ferring Pharmaceuticals; Otsuka Pharmaceuticals; PDL Biopharma; Schering-Plough Corporation; Shire Pharmaceuticals; Tillotts Pharma; UCB Pharma; VSL Pharmaceuticals. Non-pharma funding: Falk Foundation; MCS Public Relations; SHS International; Synergy Medical Education. Number of members: 24 member associations from 23 European countries. Countries of members: Austria, Belgium, Croatia, Czech Republic, Cyprus, Denmark, Finland, France, Germany, Hungary, Iceland, Ireland, Italy, Luxembourg, Netherlands, Norway, Portugal, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK. Number of full-time employees: None. Number of volunteers: 2 delegates from each member association. Affiliations: European Disability Forum (EDF); European Patients’ Forum (EPF); European Platform for Patients’ Organisations, Science and Industry (EPPOSI); Health First Europe (HFE). EUROPEAN PATIENT GROUP DIRECTORY, 2009-2010 © BURSON-MARSTELLER / PATIENTVIEW

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DISABILITY /

European Federation of Hard of Hearing People (EFHOH) http://www.efhoh.org General Secretary: Jan Lamby

c/o Horselskadades Riksforbund Box 6605 113 84 Stockholm Sweden

T: 0046-8-457-5500 F: 0046-8-457-5503 Email: efhoh@hrf.se

The only European organisation that represents all of the 81.5 million hard-ofhearing adults in Europe (one-in-seven Europeans). Its mission is to promote accessible communication, advocate for accessibility of travel, and to raise awareness of the problems of hard-ofhearing people in society.

Geographic remit: Europe.

“

Among the most important tasks for the EFHOH is raising awareness about the profile, needs, abilities and preferences of hard-of-hearing individuals in the modern world. We focus not just on identifying and lowering existing barriers, but equally so on preventing new barriers to opportunity and fulfilment from being raised.

Annual funding / income (most recent): €10,000 (2008). Pharmaceutical funding: None. Non-pharma funding: AnnieS; Bernafon AG; GN Resound; ISOC; Oticon A/S; Phonak AG; Pro Audito Winterthur; Siemens Audiologische Technik GmbH; Widex APS. Membership fees. Number of members: 31 member organisations from 21 European countries. Countries of members: Austria, Belgium, Bosnia and Herzegovina, Croatia, Czech Republic, Denmark, Estonia, Finland, France, Germany, Hungary, Ireland, Italy, Netherlands, Norway, Slovakia, Slovenia, Sweden, Switzerland, Turkey, UK. Number of full-time employees: None. Number of volunteers: Includes a 5-member Board. All work in the EFHOH is done on a voluntary basis. Affiliations: European Disability Forum (EDF); International Federation of Hard of Hearing People (IFHOH).

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COMPLEMENTARY / ALTERNATIVE MEDICINES /

European Federation of Homeopathic Patients’ Associations (EFHPA) http://www.efhpa.com Secretary: Gabriella De Angelis Chauseé de Bruxelles 132 Box 1 1190 Brussels Belgium

T: 0032-2-672-33-51 F: 0032-2-672-13-63 Email: info@britishhomeopathic.org

Promotes the harmonisation of the practice of homeopathy in Europe, and advocates its integration into European healthcare. Represents patients and users of homeopathic medicines, and local, regional, and national groups sharing the same ideals about homeopathy. Defends the rights and interests of patients in Europe who use or seek homeopathic treatment.

“

EFHPA’s role is to represent patients in Europe who use or seek homeopathic treatment—defending their rights and interests.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Membership fees. Number of members: Member associations from 15 European countries. Countries of members: Austria, Belgium, Bulgaria, France, Germany, Greece, Hungary, Italy, Netherlands, Norway, Poland, Romania, Slovakia, Switzerland, UK. Number of full-time employees: Number of volunteers: 5-person Board. Affiliations: European Patients’ Forum (EPF).

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CIVIC / CONSUMER WITH INTEREST IN HEALTHCARE /

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

T: 0032-253-866-69 F: 0032-253-941-74 Email: information@feantsa.org

A federation that brings together the not-forprofit 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.

“

The FEANTSA raises public awareness about the complexity of homelessness, and the multidimensional nature of the problems faced by homeless people.

Geographic remit: Europe. Annual funding / income (most recent): €1.2m (2009), according to the ETI Register. Pharmaceutical funding: Non-pharma funding: According to the ETI Register: core-funded by the European Commission (€1m in 2009), with €76,000 from members’ contributions. Number of members: 105 member organisations from 29 European countries. Countries of members: Austria, Belgium, Bulgaria, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Luxembourg, Macedonia, Malta, Netherlands, Norway, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK. Number of full-time employees: 8. Number of volunteers: Affiliations: European Anti-Poverty Network (EAPN); European Housing Forum; European Public Health Alliance (EPHA); Platform of European Social NGOs (Social Platform).

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NEUROLOGICAL CONDITIONS /

European Federation of Neurological Associations (EFNA) http://www.efna.net Secretary General: Alistair Newton

EFNA Secretariat 69 East King Street Helensburgh G84 7RE UK

T: 0044-(0)-1436-678-799 F: Same number. Email: information@efna.net

Brings together European umbrella organisations of neurological patient advocacy groups in a ‘partnership for progress’. Aims to improve the quality of life of people with a neurological disorder, promote better access to information, increase public awareness, and enhance the priority given to neurology by policymakers.

EFNA wants to promote a meaningful dialogue between science and society. It wants to widen the understanding of research from merely being a search for cures—to becoming the provision of information about quality of life and health economics, supplying evidence which will enable policy-makers to effect positive change.

“

Geographic remit: Europe. Annual funding / income (most recent): €199,000 (2007). Pharmaceutical funding: In 2007: Boehringer Ingelheim; GSK; Novartis. GSK points out that its 2008 grant of €25,000 represented 10% of the organisation’s revenue that year Non-pharma funding: European Commission; Medtronic Foundation. Number of members: 16 affiliated pan-European patient organisations. Countries of members: Number of full-time employees: Number of volunteers: Affiliations: European Brain Council (EBC).

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OLDER PEOPLE /

European Federation of Older Persons (EURAG) http://www.eurageurope.org Secretary General: Jaap van der Spek

Prinsenhof 6 6666 CB Heteren Netherlands

T: 0031-26-472-3588 F: 0031-26-472-3524 Email: jaapvdspek@planet.nl

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.

“

The EURAG works on improving of the quality of the social and political standards of living of older people.

Geographic remit: Europe. Annual funding / income (most recent): EURAG notes that it does not have any information on its annual revenue currently. Pharmaceutical funding: No pharma funding. Non-pharma funding: Membership fees only. Number of members: Over 120 member organisations from 28 European countries. Countries of members: Number of full-time employees: Only volunteers. Number of volunteers: 2. Affiliations: European Older People’s Platform (Age); Platform of European Social NGOs (Social Platform).

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CHILDREN / DISABILITY

European Federation of Parents of Hearing-Impaired Children (FEPEDA) http://www.fepeda.net Head of Secretariat: Sari Paloposki FEPEDA Secretariat c/o KLVL Ilkantie 4 00400 Helsinki Finland

T: 00358-40-758-9539 F: Email: sari.paloposki@pp1.inet.fi

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.

“

The FEPEDA aims to represent and defend the rights and interest of all parents of children with a hearing disability. We focus our activities on improving the quality of life of children with a hearing disability and their families.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Membership fees. Number of members: 22 member associations from 20 European countries. Countries of members: Austria, Belgium, Bulgaria, Czech Republic, Denmark, Estonia, Finland, France, Germany, Ireland, Italy, Lithuania, Luxembourg, Netherlands, Poland, Portugal, Spain, Sweden, Switzerland, UK. Number of full-time employees: Number of volunteers: Affiliations: European Disability Forum (EDF).

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COMPLEMENTARY / ALTERNATIVE MEDICINES /

European Federation of Patients’ Associations for Anthroposophic Medicine (EFPAM) http://www.efpam.org Secretary: Colette Pradelle EFPAM Secretariat La Commanderie 10140 Amance France

T: 0033-3-2541-3627 F: 0033-3-2541-4920 Email: colette.pradelleapma@wanadoo.fr

Aims to represent the interests of patients who want to use anthroposophic medicine (a form of complementary medicine), together with, or instead of, other medical treatments. Lobbies European, international and national institutions on behalf of access, affordability, and availability.

“

The EFPAM wants to see an extension of citizens' rights to reimbursement by health insurances of all anthroposophic medicine—in conformity with the principal of the equality of citizens. Anthroposophic medicinal products are covered by national insurances in several Member States. The EFPAM is a strong advocate of freedom of choice in medicine.

Geographic remit: Europe. Annual funding / income (most recent): €10,000. Pharmaceutical funding: No pharma funding. Non-pharma funding: Membership fees; sponsorship. Number of members: 15 member patient associations from 15 European countries. Countries of members: Austria, Belgium, Denmark, Finland, France, Germany, Iceland, Italy, Netherlands, Norway, Romania, Spain, Sweden, Switzerland, UK. Number of full-time employees: None. Number of volunteers: Affiliations: European Public Health Alliance (EPHA); corresponding member of European Coalition on Homeopathic and Anthroposophic Medicinal Products (ECHAMP).

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SKIN /

European Federation of Psoriasis Associations (EUROPSO) http://www.europso.eu Secretary: André Cats

Kimwierde 420 1353 ez Almere Netherlands

T: 0031-365-313-052 F: Email: andre.cats@europso.org

An umbrella organisation for psoriasis patient associations in Europe. Advocates in favour of equal treatment, opportunity, and information for all psoriasis patients in Europe. Acts as a reference source for pan-European information on psoriasis. Supports the emergence and establishment of psoriasis patients' associations in European countries.

“

EUROPSO is the strong-voiced ambassador and negotiator for psoriasis patient associations in Europe. EUROPSO's actions are directed especially towards the supra-national level of the health authorities and related organisations, the health professions, associations and companies, and the media.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Membership fees. Number of members: 18 national or regional patient associations from 18 European countries. Countries of members: Belgium, Bulgaria, Denmark, Estonia, Finland, France, Germany, Iceland, Lithuania, Netherlands, Norway, Poland, Portugal, Slovakia, Slovenia, Spain, Sweden, Switzerland. Number of full-time employees: None. Number of volunteers: 8-person Executive Board. Affiliations: European Disability Forum (EDF).

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PUBLIC HEALTH /

European Federation of Road Traffic Victims (FEVR) http://www.fevr.org President: Brigitte Chaudhry, MBE

PO Box 53318 London NW10 3WT UK

T: 0044-(0)20-8964-1800 F: Email: president@fevr.org

Aims to increase awareness in road users and the general public of the scale of road traffic accidents, and to stress the importance of measures and changes of behaviour that could reduce accidents (particularly among those of the most vulnerable road users). Coordinates distribution of educational materials and runs informational campaigns. Promotes the World Day of Remembrance for Road Traffic Victims, an annual event supported by the United Nations since 2005 [http://www.worlddayofremembrance.org].

Pharmaceutical funding: -

“

Geographic remit: Europe. Annual funding / income (most recent): -

“

Europe (and all other continents) face the challenge of how to stop the all-toomany road deaths and injuries. The World Day of Remembrance offers an ideal opportunity to draw attention to the urgency of the task, and to the need for finding solutions—which must include a better post-crash medical response.

Non-pharma funding: -

Number of members: 12 member organisations from 11 European countries. Countries of members: Belgium, France, Germany, Greece, Italy, Luxembourg, Netherlands, Portugal, Spain, Switzerland, UK. Number of full-time employees: None. Number of volunteers: Affiliations: -

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CARERS /

European Federation of Unpaid Parents and Carers at Home (FEFAF) http://www.fefaf.be Secretary General: Marielle Helleputte Avenue Père Damien 76 1150 Brussels Belgium

T: 0032-2-771-23-34 F: 0032-2-771-23-34 Email: info@fefaf.be

An 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.

“

FEFAF requests recognition from the EU of the human, social, and economic value of unremunerated ‘family-based work’—of attention, care and education—carried out at home toward a dependent relative.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Number of members: 20 national associations and federations from 15 European countries. Countries of members: Austria, Belgium, France, Germany, Hungary, Ireland, Italy, Luxembourg, Poland, Romania, Slovakia, Spain, Sweden, Switzerland, UK. Number of full-time employees: Number of volunteers: Affiliations: Platform of European Social NGOs (Social Platform).

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GENETIC / RARE DISEASES /

European Galactosaemia Society (EGS) http://www.galactosaemia.com Secretary: Maaike van Kempen

c/o Jeroen and Maaike van Kempen Zandoogjelaan 4 5691 RJ Son Netherlands

T: 0031-499-477-509 F: 0031-499-464-383 Email: secretary@galactosaemia.eu

A support group for people with the 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.

“

Although galactosaemia is a very rare disease, the EGS represents a relatively high number of galactosaemia patients in Europe—over 800.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: The EGS notes that it receives no pharma funding. Non-pharma funding: The EGS states that it has no funding. Number of members: 13 member associations from 13 European countries. Countries of members: Austria, Belgium, Denmark, Estonia, France, Germany, Ireland, Italy, Netherlands, Norway, Spain, Switzerland, UK. Number of full-time employees: Number of volunteers: About 30, plus 2 or 3 volunteers per group. Affiliations: -

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GENETIC / RARE DISEASES /

European Genetic Alliances Network (EGAN) http://www.egan.eu Secretary General: Dr Cor Oosterwijk

c/o VSOP (Dutch Genetic Alliance) Koninginnelaan 23 3762 DA Soest Netherlands

T: 0031-035-603-4040 F: 0031-035-602-7440 Email: egan@egan.eu

A network of national genetic alliances and European diseasespecific patient groups with a special interest in genetics, genomics, and biotechnology. Works for a patient voice in the medical and health-research policies that might allow patients to benefit from genetics, genomics, and biotechnology through early detection and therapy development.

“

The EGAN’s mission is to seek a world in which genetic, multifactoral, and congenital disorders are understood, effectively treated and/or prevented, and the people affected are adequately supported.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Number of members: 6 regional/national alliances (Eastern Europe, Germany, Italy, the Netherlands, the UK, and Sweden), and about 20 European disease-specific patient organisations. Countries of members: Number of full-time employees: Number of volunteers: Affiliations: European Patients' Forum (EPF); European Platform for Patients' Organisations, Science and Industry (EPPOSI); International Genetic Alliance of Parent and Patient organisations (IGA); World Alliance of Organisations for the Prevention of Birth Defects (WAO).

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BLOOD DISORDERS /

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

Rue du Luxembourg 22-24 1000 Brussels Belgium

T: 0032-2-761-6627 F: 0032-2-777-0510 Email: info@ehc.eu

An umbrella organisation for haemophilia societies and associations in Europe. Aims to improve diagnostic and treatment facilities, ensure the adequate supply of safe factor concentrates, promote patients’ rights, stimulate research, and follow and influence developments in European health policy.

“

The EHC promotes patients' rights and raises ethical issues—because minority groups need well-established organisations to take care of their interests.

Geographic remit: Europe. Annual funding / income (most recent): €166,000 (2007). Pharmaceutical funding: Baxter Healthcare SA; Bayer Schering Pharma; Biotest AG; CSL Behring; Octapharma; Sanquin; Wyeth. Non-pharma funding: Membership fees. Number of members: 43 national associations from 34 European countries. Countries of members: Albania, Austria, Belgium, Bosnia and Herzegovina, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Macedonia, Netherlands, Norway, Poland, Portugal, Romania, Serbia and Montenegro, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK. Number of full-time employees: Number of volunteers: 10. Affiliations: European Disability Forum (EDF); European Organisation for Rare Diseases (EURORDIS); partner of World Federation of Hemophilia (WFH). EUROPEAN PATIENT GROUP DIRECTORY, 2009-2010 © BURSON-MARSTELLER / PATIENTVIEW

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NEUROLOGICAL CONDITIONS /

European Headache Alliance (EHA) http://www.e-h-a.eu President: Audrey Craven

c/o Migraine Association of Ireland Unit 14, Block 5 Port Tunnel Business Park Clonshaugh Dublin 17, Ireland

T: 00353-86-232-2578 F: 00353-1802-2044 Email: audreycraven@migraine.ie

Promotes awareness and understanding of migraine and other headache disorders. Aims to see improvements in access to appropriate treatment and care, and better quality of life for people affected by headache and migraine.

“

The EHA offers information and education to sufferers, the public and physicians. We argue for better access to accurate, understandable information, and want increased priority for treatment of migraine and other headache disorders by policy-makers and healthcare providers. We promote research on headache and migraine (and related areas), and align the efforts of national migraine patient groups in Europe.

Geographic remit: Europe.

Annual funding / income (most recent): Pharmaceutical funding: Janssen Cilag; MSD. GSK points out that its 2008 grant of €15,000 represented 47% of the organisation’s revenue that year Non-pharma funding: Pro-bono provided expertise, support and advice by medical, accounting, and legal experts. Number of members: 17 member associations from 15 European countries. Countries of members: Austria, Belgium, Finland, Germany, Iceland, Ireland, Italy, Luxembourg, Netherlands, Norway, Serbia, Spain, Sweden, Switzerland, UK. Number of full-time employees: Number of volunteers: 6. Affiliations: European Federation of Neurological Associations (EFNA).

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CIRCULATORY / HEART DISEASE /

European Heart and Lung Transplant Federation (EHLTF) http://www.ehltf.info Chairperson: Terence Mangan

BP 7 Anderlecht-Erasme B 1070 Brussels Belgium

T: 00353-1-495-0940 F: None. Email: terrymangan@gmail.com

Provides patient support and information, raises awareness of organ donation, and advocates with European political institutions.

“

We seek integrity in all undertakings on behalf of European heart-and-lun g transplant recipients.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Astellas Pharma; Novartis. Non-pharma funding: Membership fees. Number of members: 17 national organisations from 16 European countries. Countries of members: Austria, Belgium, Denmark, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Netherlands, Norway, Poland, Sweden, Switzerland, UK. Number of full-time employees: Number of volunteers: 6-person voluntary managing committee. Affiliations: European Patients’ Forum (EPF); European Patients Alliance for Transplantation.

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CIRCULATORY / HEART DISEASE /

European Heart Network (EHN) http://www.ehnheart.org Director: Susanne Løgstrup

Rue Montoyer 31 1000 Brussels Belgium

T: 0032-2-512-91-74 F: 0032-2-503-35-25 Email: info@ehnheart.org

An alliance of heart foundations and similar NGOs. Advocates through networking, education, and patient support for the prevention and reduction of cardiovascular disease. Influences European policymakers in favour of a heart-healthy lifestyle, encourages research, and links groups interested in cardiovascular disease prevention. In 2007-2009 ran the MEP heart group, one of the largest informal all-party groups in the European Parliament compromising members from all Member States.

“

The EHN and its member organisations mobilise broad support across Europe for cardiovascular health promotion and cardiovascular disease prevention, and drive the development at political level of prevention guidelines.

Geographic remit: Europe.

Annual funding / income (most recent): €557,000 (2008). Pharmaceutical funding: No pharma funding. Non-pharma funding: Core funding from member organisations. European Commission (€94,000 in 2008). Number of members: 33 member organisations from 26 European countries. Countries of members: Austria, Belgium, Bosnia and Herzegovina, Cyprus, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Lithuania, Netherlands, Norway, Portugal, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK. Number of full-time employees: 3 (and 1 part time). Number of volunteers: None. Affiliations: European Public Health Alliance (EPHA); World Heart Federation (WHF); World Hypertension League (WHL).

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NEUROLOGICAL CONDITIONS / GENETIC / RARE DISEASE

European Huntington’s Disease Network (EHDN) http://www.euro-hd.net Chair of the Executive Committee: Bernhard Landwehrmeyer

Universitaetsklinik Ulm, Neurologie Oberer Eselsberg 45/1 89081 Ulm Germany

T: 0049-731-500-63-101 F: 0049-731-500-63-082 Email: jamie@euro-hd.net

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.

“

EHDN is achieving its goal of enrolling a majority of HD patients and family members in Europe in its Registry study. Registry facilitates research and clinical development for professionals interested in HD.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: High-Q Foundation [a non-profit US foundation]. Number of members: 700 individual members. Countries of members: All European countries. Number of full-time employees: 25. Number of volunteers: Affiliations: -

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GENDER HEALTH /

European Institute of Women’s Health (EIWH) http://www.eurohealth.ie Director General: Peggy Maguire

33 Pearse Street Dublin 2 Ireland

T: 00353-1-671-5691 F: 00353-1-671-5662 Email: info@eurohealth.ie

Established to ensure that women’s health issues appear on the European agenda. Encourages the European Commission and Member States to see that information and education programmes consider women, and to ensure that women are involved in policy development. Promotes gender equity in public health, research, and social policies across Europe.

“

The EIWH has had successes in making gendermainstreaming a part of the EU public health policy and research agenda.

Geographic remit: Europe.

Annual funding / income (most recent): Pharmaceutical funding: GSK points out that its 2008 grant of €20,000 represented 12% of the organisation’s revenue that year Non-pharma funding: Project funding from the EU; sponsorship in kind; unrestricted educational grants. Number of members: 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. Countries of members: Number of full-time employees: 1. Number of volunteers: Affiliations: European Men’s Health Forum (EMHF) Executive Committee; Health First Europe (HFE); International Osteoporosis Foundation (IOF) consultation panel on osteoporosis.

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RENAL /

European Kidney Health Alliance (EKHA) http://www.ekha.eu Permanent Brussels Representative: Anna Rouillard

9-13 Rue D'Idalie 1050 Brussels Belgium

T: 0032-2-639-62-30 F: Email: anna.rouillard@ekha.eu

An alliance of not-for-profit organisations representing the key stakeholders in kidney-health issues in Europe. Provides objective and scientifically-sound advice and information to the EU regarding the identification of the most effective medical and socialresearch projects to deliver progress in therapy, and tangible benefits to kidney patients. Maintains dialogue with the EU to promote best practice in providing treatment and care to kidney patients.

“

The EKHA works on the principle that the issue of kidney health and disease must be considered at European level, and that both the European Commission and European Parliament have vital roles to play in assisting national governments with these challenges.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: -

Number of members: 5 pan-European or international bodies (2 NGOs and 3 medical associations). Countries of members: Number of full-time employees: Number of volunteers: Affiliations: -

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RENAL /

European Kidney Patients’ Federation (CEAPIR) http://www.ceapir.eu President: Nadine Stohler

c/o the Irish Kidney Association Donor House, Block 43A Parkwest Dublin 12 Ireland

T: 00353-1-6205-306 F: 00353-1-6205-366 Email: info@ceapir.org

Aims to raise renal disease onto the EU public-health agenda. Promotes the wellbeing, treatment, and living conditions of kidney patients, exchanges information with bodies involved in renal therapy, and works to increase public awareness of organ donation and transplantation.

“

The foundation of our activities is the health and the wellbeing of patients with chronic kidney disease (CKD) and their carers. We include patients in the phase of early detection, those in dialysis treatment (haemodialysis and peritoneal dialysis), and those after kidney transplantation.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Roche. Non-pharma funding: Number of members: 24 national kidney patients’ associations from 21 European countries. Countries of members: Austria, Croatia, Denmark, Estonia, Finland, France, Germany, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Netherlands, Norway, Poland, Portugal, Slovenia, Sweden, Switzerland, UK. Number of full-time employees: None. Number of volunteers: 5-person Executive Committee. Affiliations: European Disability Forum (EDF); European Kidney Health Alliance (EKHA); European Patients' Forum (EPF); International Federation of Kidney Foundations (IFKF).

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ARTHRITIS /

European League Against Rheumatism (EULAR) http://www.eular.org Executive Director: Heinz Marchesi

Seestrasse 240 8802 Kilchberg Zurich Switzerland

The European League Against Rheumatism (EULAR) is the organisation which represents the patient, health professional and scientific societies of rheumatology of all the European nations. EULAR fosters excellence in education and research in the field of rheumatology. It promotes the translation of research advances into daily care and fights for the recognition of the needs of people with musculoskeletal diseases by the governing bodies in Europe.

“

T: 0041-44-716-30-30 F: 0041-44-716-30-39 Email: eular@eular.org

EULAR aims for reductions in the burden of rheumatic diseases on the individual and society, and for improvements to the treatment, prevention and rehabilitation of musculoskeletal diseases.

Geographic remit: Europe (and neighbouring Middle Eastern countries). Annual funding / income (most recent): Over CHF 1m [approximately €659,000]. Pharmaceutical funding: 32 pharmaceutical companies are currently corporate fee-paying members of EULAR. Non-pharma funding: Congress revenue; membership fees; publications. Number of members: 130. Countries of members: Various European countries. Number of full-time employees: 7. Number of volunteers: Over 100. Affiliations: International League of Associations for Rheumatology (ILAR).

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DISABILITY /

European League of Stuttering Associations (ELSA) http://www.stuttering.ws Chairman: Edwin Farr

31 Grosvenor Road Jesmond Newcastle-upon-Tyne NE2 2RL UK

T: 0044-191-281-8003 F: 0044-191-281-8003 Email: elsa.europe@totalise.co.uk

An 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.

“

The most powerful tools in the ELSA’s exchange work are the European seminars which bring together board members of the national stuttering organisations and other interested delegates and professionals working in the field. Each seminar is devoted to a particular topic.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: European Commission. Number of members: 26 member associations from 25 European countries. Countries of members: Austria, Belgium, Bulgaria, Croatia, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Luxembourg, Netherlands, Norway, Poland, Serbia, Slovenia, Spain, Sweden, Switzerland, UK. Number of full-time employees: Number of volunteers: Affiliations: European Disability Forum (EDF).

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LIVER DISEASE /

European Liver Patients Association (ELPA) http://www.elpa-info.org President: Nadine Piorkowsky

F. De Renesselaan 57 3800 Sint-Truiden Belgium

T: 0049-(0)-2225-18476 [President] F: Email: contact@elpa-info.org

Furthers the interests of people with liver disease. Aims include promoting awareness and prevention, and raising the relatively low profile of liver disease (as compared with other areas of medicine, such as heart disease).

“

More than 23 million people in Europe are infected with either hepatitis B or C. But the current lack of awareness and appropriate screening means that, shockingly, up to 90 per cent of them are not even aware of their infection.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Unrestricted grants from Bristol-Myers Squibb; Gilead; Novartis; Roche; ScheringPlough. Non-pharma funding: Membership fees. Number of members: 21 member organisations from 16 European countries. Countries of members: Austria, Belgium, Bosnia and Herzegovina, Bulgaria, Croatia, France, Germany, Italy, Netherlands, Norway, Poland, Portugal, Slovakia, Spain, Sweden, UK. Number of full-time employees: Number of volunteers: Affiliations: -

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GENETIC / RARE DISEASE /

European Marfan Support Network (EMSN) http://www.marfan.de/emsn Chairperson: Béatrice Preston

Römerweg 4 4410 Liestal Switzerland

T: 0041-(0)6-921-91-89 F: Email: preston5@bluewin.ch

A coalition of national support organisations for people affected by the Marfan syndrome (or related disorders). Supports each member organisation and exchanges information about Marfan syndrome and living with this complex genetic disorder. Runs an annual EMSN Young Adults Meeting.

“

The EMSN slogan of ‘Together we can’ symbolises the close collaboration that people with Marfan syndrome have throughout Europe, thanks to the EMSN.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Membership fees. Number of members: 12 member organisations from 11 European countries. Countries of members: Belgium, Denmark, Finland, France, Germany, Netherlands, Norway, Slovakia, Spain, Switzerland, UK. Number of full-time employees: None. Number of volunteers: All EMSN participants are volunteers. Affiliations: International Federation of Marfan Syndrome Organizations (IFMSO).

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GENDER HEALTH /

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

Rue de l’Industrie 11 1000 Brussels Belgium

T: 0032-(0)-2-234-30-58 F: 0032-(0)-2-230-33-00 Email: office@emhf.org

A European umbrella organisation dedicated to improving men’s health. Engages in awareness-raising campaigns, and contributes to European public-health and social-policy debates. Participates in research development, and in key initiatives aimed at building a healthier future for men and society.

“

The EMHF represents a major opportunity for a wide range of organisations and individuals to work together to raise the profile of men’s health at a Europe-wide level, and within individual countries.

Geographic remit: Europe. Annual funding / income (most recent): €172,000 (2008). Pharmaceutical funding: Bayer Schering; Pfizer Europe; Schering Roche. Non-pharma funding: Clinical solutions; GE Healthcare; European Commission; EAASM. Membership fees. Number of members: 25 member organisations from 16 European countries. Countries of members: Austria, Denmark, Finland, France, Germany, Hungary, Ireland, Italy, Netherlands, Norway, Portugal, Slovakia, Sweden, Switzerland, UK, Ukraine. Number of full-time employees: 3 full-time equivalent. Number of volunteers: 9 Board members and other volunteers. Affiliations: European Federation of Pharmaceutical Industries and Associations (EFPIA) industry-patient think tank; European Patients' Forum (EPF); European Public Health Alliance (EPHA); GAMIAN Europe.

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NEUROLOGICAL CONDITIONS /

European Multiple Sclerosis Platform (EMSP) http://www.ms-in-europe.org Secretary General: Christoph Thalheim

Rue Auguste Lambiotte 144/8 1030 Brussels Belgium

T: 0032-(0)-2-305-80-12 F: 0032-(0)-2-305-80-11 Email: emsp@emsp.org

Exchanges and disseminates information on multiple sclerosis (MS), encourages research into the condition, promotes the development of joint-action programmes among national MS societies in Europe, and acts as a focal point for liaison with the institutions of the EU and other European organisations.

Geographic remit: Europe.

“

European legislation gains more and more importance in many areas of interest for people with MS. The EMSP is well placed to directly influence the shaping and implementation of European legislation relevant to people with MS—for instance, in the vital fight against the existing health inequalities for Europeans with MS.

Annual funding / income (most recent): €774,000 (2008). Pharmaceutical funding: Baxter; Bayer Schering Pharma; Biogen Idec; Genzyme; Merck Serono; Novartis; Pfizer; Pfizer Foundation; Sanofi-Aventis; Teva; UCB. GSK points out that its 2008 donation of €25,000 represented 3% of the organisation’s revenue that year. Non-pharma funding: Coloplast; Ernst & Young (pro-bono work); European Commission; Loyens (pro-bono work); Medtronic; Medtronic Foundation. Membership fees. Number of members: 34 member societies from the following 32 European countries. Countries of members: Austria, Belgium, Bosnia-Herzegovina, Bulgaria, 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. Number of full-time employees: 2, plus 2 part-time staff. Number of volunteers: 8-person Executive Committee. Affiliations: European Citizen Action Service (ECAS); European Disability Forum (EDF); European Federation of Neurological Associations (EFNA); European Patients' Forum (EPF). EUROPEAN PATIENT GROUP DIRECTORY, 2009-2010 © BURSON-MARSTELLER / PATIENTVIEW

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CANCER /

European Myeloma Platform (EMP) http://www.emp-myeloma.eu Secretary: Lia van Ginneken-Noordman

Zonneweeldelaan 23/32 3600 Genk Belgium

T: 0032-(2)-476-3106 F: 0032-(2)-477-6210 Email: EMP-office@uzbrussel.be

A ‘patient-for-patient’ support network for myeloma patients and their relatives. Independent of commercial or political influence, the EMP aims to make treatments and medication more accessible, to provide access to information on new and current clinical trials, to stimulate and support research, and to collaborate with European myeloma patient organisations.

Geographic remit: Europe.

“

Our mission is to let the interests of European myeloma patients be represented by patients themselves—who then gain an immediate voice at European institutions and in European health politics.

Annual funding / income (most recent): Pharmaceutical funding: No pharma funding. Non-pharma funding: Most expenditures are covered by partner organisations (including Universitair Ziekenhuis Brussel), by EMP member organisations, or by individual members. Number of members: 14 members from 8 European countries. Countries of members: Austria, Belgium, Denmark, France, Germany, Netherlands, Portugal, Switzerland. Number of full-time employees: Number of volunteers: 10. Affiliations: European Cancer Patient Coalition (ECPC); European Organisation for Rare Diseases (EURORDIS).

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ARTHRITIS / CHILDREN

European Network for Children with Arthritis (ENCA) http://www.enca.org ENCA Secretary: Caroline Cox

c/o Children’s Chronic Arthritis Association Ground Floor, Amber Gate City Wall Road, Worcester, WR1 2AH UK

T: 0044-(0)-1905-745-595 F: 0044-(0)-1905-745-703 Email: secretary@enca.org

An informal network of parent support groups and national juvenile idiopathic arthritis (JIA) associations in Europe. E xc h a n g es in f o rm a ti on , promotes common projects at European level, and creates informal networks and regular exchanges between associations.

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The ENCA members get the latest professional guidance from the world’s leading professionals in the field of rheumatology, and can help to change the profile that childhood arthritis carries within Europe.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Membership fees. Number of members: 8 member associations from 8 European countries. Countries of members: Belgium, Denmark, France, Germany, Italy, Netherlands, Portugal, UK. Number of full-time employees: Number of volunteers: Affiliations: -

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SCIENTIFIC RESEARCH /

European Network for Patients Partnering in Clinical Research (ENPCR) http://patientpartner-europe.eu Project Officer: Kim Wever c/o VSOP Koninginnelaan 23 3762 DA Soest Netherlands

T: 0031-356-034-4033 / 0031-356-03-4040 F: 0031-356-03-7440 Email: enpcr@patientpartner-europe.eu

A virtual network functioning within a 3-year EU-funded project, PatientPartner. Aims to empower patient organisations for their role as partners in clinical trials. The ENPCR’s immediate goal is to open a web-based platform for discussion between patient organisations on patient issues related to clinical trials and research. Ultimately hopes to be a ‘one-stop shop’ for other stakeholders to get in touch with European patient organisations for advice on, or participation in, clinical research.

“

The ENPCR is a think tank in the rapidly-changing clinical-trials environment. Patient organisations will have the opportunity to bring in their perspective and knowledge. Patient involvement can change the clinical trials of the future.

Geographic remit: Europe. Annual funding / income (most recent): The ENPCR parent, PatientPartner, has an annual budget from the European Commission of €300,000. Pharmaceutical funding: Non-pharma funding: European Commission Seventh Framework Programme. Number of members: 70 member organisations from 25 European countries. Countries of members: Austria, Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, Germany, Greece, Hungary, Ireland, Italy, Lithuania, Malta, Netherlands, Norway, Poland, Portugal, Romania, Slovakia, Spain, Turkey, UK. Number of full-time employees: 1. Number of volunteers: Affiliations: Not a member of any umbrella group, but the ENPCR parent, PatientPartner, was set up by four umbrella organisations: the Dutch Genetic Alliance (VSOP), the European Forum for Good Clinical Practice (EFGCP), the European Genetic Alliances’ Network (EGAN), and the British Genetic Interest Group (GIG).

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PUBLIC HEALTH /

European Network for Smoking Prevention (ENSP) http://www.ensp.org Secretary General: Francis Grogna

Chaussee d’Ixelles 144 1050 Brussels Belgium

T: 0032-2-230-65-15 F: 0032-2-230-75-07 Email: info@ensp.org

An international non-profitmaking organisation that promotes greater coherence in smoking-prevention activities, and encourages the adoption of comprehensive tobacco-control policies at national and European levels. Facilitates the activities of national coalitions and specialised smoking-prevention networks.

Geographic remit: Europe.

“

The ENSP is making a difference in tobacco control. It is developing practical steps and tools to promote smoke-free places at European and national levels, and is bringing together experiences from countries that have implemented comprehensive smoking bans in public places (including educational establishments and workplaces), to help other countries do the same and explore the impact of smoking bans on young women.

Annual funding / income (most recent): €455,000 (2008). Pharmaceutical funding: Non-pharma funding: European Commission. Membership fees. Number of members: Over 500 members in 28 national member coalitions (not all patient groups—some are government bodies) from 28 European countries. Countries of members: Austria, Belgium, Bulgaria, Cyprus, Czech Republic, Denmark, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Netherlands, Norway, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK. Number of full-time employees: 3, and 1 part time. Number of volunteers: Affiliations: European Public Health Alliance (EPHA).

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MENTAL HEALTH /

European Network of (Ex-) Users and Survivors of Psychiatry (ENUSP) http://www.enusp.org Chair and Interim Secretary: Mary Nettle Zabel-Krueger-Damm 183 13469 Berlin Germany

Aims to influence decisions about psychiatry on a European level to gain improvements in treatment and the living situation of the users and survivors of psychiatry. Represents independent users and survivors of psychiatry, and encourages international exchange of information between them. Concerns includes the humanrights aspects of psychiatric diagnoses, the upholding of psychiatric advanced directives, and the rights to drugfree help, to alternatives beyond psychiatry, and to accommodation, work and income.

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T: 0049-30-8596-3706 F: 0049-30-4039-8752 Email: desk@enusp.org

ENUSP is the only democratic and independent umbrella organisation on a European level that unifies national organisations of people who are, or have been, receiving psychiatric services.

Geographic remit: Europe.

Annual funding / income (most recent): €16,000. Pharmaceutical funding: ENUSP states that it does not accept funding from pharma companies on principle, and that it supports the European Public Health Alliance (EPHA) 2001 position on the independence of patient organisations. Non-pharma funding: A limited number of donations and membership fees. Grants from the European Commission for the reimbursement of costs incurred in participating in European research projects (such as VALUE+). Number of members: 40 member organisations from 32 European countries. Countries of members: Austria, Belgium, Bosnia and Herzegovinia, Bulgaria, 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, UK. Number of full-time employees: Number of volunteers: All staff are volunteers. Affiliations: European Democratic Movement for Mental Health (EDMMH); European Disability Forum (EDF); European Patients' Forum (EPF); International Disability Caucus (IDC); World Network of Users and Survivors of Psychiatry (WNUSP). EUROPEAN PATIENT GROUP DIRECTORY, 2009-2010 © BURSON-MARSTELLER / PATIENTVIEW

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NEUROLOGICAL /

European Network of Fibromyalgia Associations (ENFA) http://www.enfa-europe.eu President: Robert Boelhouwer

PO Box 2 Keizerinlaan 3 Brussels Belgium

T: 0031-63-40-82-137 F: Email: contact@enfa-europe.eu

A network of patient associations and support groups functioning in close consultation with national associations. The network aims to push forward the boundaries which currently exist in the understanding and experience and treatment of fibromyalgia. Its goal is to see fibromyalgia recognised across Europe as a chronic disease.

Geographic remit: Europe.

“

ENFA, as the European umbrella of fibromyalgia organisations, wishes to inform as much as possible the general public, medical professionals, policy-makers and politicians that early diagnosis, treatments, and information are all still lacking for the estimated 14 million people with fibromyalgia in Europe.

Annual funding / income (most recent): The ENFA states that it has no detailed information yet. Pharmaceutical funding: Pfizer Europe (2008). Non-pharma funding: Membership fees. Number of members: 10 member associations from 10 European countries. Countries of members: Belgium, Denmark, France, Germany, Italy, Netherlands, Portugal, Spain, Sweden, UK. Number of full-time employees: Number of volunteers: 7-person Committee. Affiliations: -

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PUBLIC HEALTH /

European Network of Quitlines (ENQ) http://www.enqonline.org Network Co-ordinator: Alice Roberts

211 Old Street London EC1V 9NR UK

T: 0044-(0)20-7251-1551 F: Email: a.roberts@quit.org.uk

An initiative that aims to maximise collaboration between EU Member States in tobacco control and smoking cessation. Promotes and supports European quitlines as a public-health intervention, and assists in the establishment of new quitlines. Raises the quality of quitline services by sharing expertise, experience, modes of best practice, and by disseminating an evidence base.

Geographic remit: Europe.

“

The ENQ addresses the needs of our stakeholders at an EU level. Our individual members in each Member State have a large reach. They impact as a public-health intervention, improving the accessibility of smoking-cessation services to many disadvantaged groups, and are a relatively low-cost smoking-cessation method.

Annual funding / income (most recent): Pharmaceutical funding: Pfizer. Non-pharma funding: European Commission. Number of members: 29 member organisations (not all patient groups—some are government bodies) from 29 European countries. Countries of members: Austria, Belgium, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Malta, Netherlands, Norway, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK. Number of full-time employees: 1. Number of volunteers: Affiliations: -

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GENETIC / RARE DISEASE /

European Network of Rare Disease Help Lines (Rapsody Online) http://www.rapsodyonline.eu Network co-ordinator: Shane Lynam

c/o EURORDIS (Plateforme Maladies Rares) 102 rue Didot 75014 Paris France

T: 0033-1-56-53-52-10 F: 0033-1-56-53-52-15 Email: francois.houyez@eurordis.org

A network that aims to increase awareness, efficiency, and best-practice standards among member rare-disease help-line organisations. Drawing on expertise gathered from help-line services across Europe, Rapsody encourages members to recognise the ever-changing needs of families/patients. Provides a listing of European services for people with a rare disease.

Geographic remit: Europe.

“

A united group of help-line experts are forging a community which shares and advises help lines and patients. A truly amazing collaboration has been achieved—quietly, and with dedication, help-line organisations have been sharing their expertise, and building for the future.

Annual funding / income (most recent): Pharmaceutical funding: Baxter International Foundation; Sigma-Tau Pharmaceuticals. Non-pharma funding: European Commission; Groupe Initiatives Mutuelles (UGIM). Number of members: 10 member associations (most of which are patient organisations) from 7 European countries. Countries of members: Number of full-time employees: Number of volunteers: Affiliations: Founded by the European Organisation for Rare Diseases (EURORDIS).

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DISABILITY /

European Network on Independent Living (ENIL) http://www.enil.eu Executive Director: Jamie Bolling

ENIL Secretariat Gran Vía Marqués del Turia, 49-7º,12ª 46005 Valencia Spain

T: 0034-96-325-54-57 F: 0034-96-325-54-59 Email: secretariat@enil.eu

A network of organisations that promote an understanding of independent living in Europe. Develops resource materials, facilitates information sharing, works on developing European concepts, principles, and runs educational events, seminars, and workshops.

Geographic remit: Europe.

“

ENIL's vision is to become a Europe-wide platform for people with a disability and disability organisations promoting independent-living values, principles, and practices among all disability stakeholders in the EU. The bottom line of our activities is to see all people with a disability enjoy equal opportunities and independent living up to their personal choice.

Annual funding / income (most recent): Pharmaceutical funding: No pharma funding. Non-pharma funding: Project funding from the Government of Valencia; European Commission; Open Society Mental Health Initiative. Number of members: 29 member organisations from 16 European countries. Countries of members: Austria, Belgium, Bulgaria, Finland, Germany, Greece, Ireland, Italy, Latvia, Malta, Norway, Serbia, Spain, Sweden, Switzerland, UK. Number of full-time employees: 9 (not all full time). Number of volunteers: Over 30 formal volunteers, including national coordinators and board members, plus a wide network of grassroots activists. Affiliations: European Disability Forum (EDF).

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NEUROLOGICAL CONDITIONS /

European Neuro Muscular Centre (ENMC) http://www.enmc.org Research Manager: Annette Boersen

Lt. Gen. Van Heutzslaan 6 3743 JN Baarn Netherlands

T: 0031-(0)35-54-80-481 F: 0031-(0)35-54-80-499 Email: enmc@enmc.org

An international research-support organisation for neuromuscular disorders. Aims to facilitate communication between scientists and clinicians working in the field of neuromuscular disease. Runs a clinical trial network, forums, and holds about 8 workshops a year. Has patient organisations as member and partner organisations.

“

The ENMC ensures financial support for workshops, and offers organisational support. 153 workshops on neuromuscular disorders have been held, from which 1,100 participants have benefited.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Genzyme Europe B.V. Non-pharma funding: Member organisations. Muscular Dystrophy Association (MDA). Number of members: 9 member patient organisations from 8 European countries. Countries of members: Denmark, France, Germany, Italy, Netherlands, Slovenia, Switzerland, UK. Number of full-time employees: None (7 part time). Number of volunteers: None. Affiliations: -

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PUBLIC HEALTH /

European Nutrition for Health Alliance (ENHA) http://www.european-nutrition.org Secretary General: Frank de Man

11 Tufton Street London SW1P 3QB UK

T: 0044-(0)-20-7340-0440 F: 0044-(0)-20-7340-0441 Email: info@european-nutrition.org / rhiannonfreeland@ilcuk.org.uk

Supports EU policymakers and national governments in designing effective policy and action plans. Partners with EU and national platforms, societies, and other healthcare stakeholders to raise awareness and to help implement change. Assists in organising or co-sponsoring (inter-)national events and conferences, and acts as a source of knowledge.

Geographic remit: Europe.

“

The ENHA is a united effort to raise awareness of the importance and the urgency of the issue of malnutrition, and to build an agenda for action at EU and MemberState levels.

Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Donations from international industries involved in medical nutrition; grants. Number of members: 8 member (mainly professional) organisations. Countries of members: Number of full-time employees: 1.5. Number of volunteers: None. Affiliations: -

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OLDER PEOPLE /

European Older People’s Platform, (AGE) http://www.age-platform.org Policy Officer: Isabel Borges

Rue Froissart 111 1040 Brussels Belgium

T: 0032-2-280-14-70 F: 0032-2-280-15-22 Email: info@age-platform.org / isabel.borges@age-platform.org

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 promote networking among older people’s groups. AGE has been campaigning on the extension of EU non-discrimination legislation in access to goods and services, education, and healthcare. AGE empower its members by giving them the right support on how they should advance older people’s concerns at national level—concerns such as the quality of long-term care.

Geographic remit: Europe.

“

Annual funding / income (most recent): €873,000 (2008). Pharmaceutical funding: Non-pharma funding: European Commission grant (€753,000); membership fees and donations (€116,000); other (€19,000). Number of members: At end-2008, 139 member organisations (10 European-wide organisations and 110 national or regional-level associations), and 19 observer members from 28 European countries. Countries of members: Austria, Belgium, Bulgaria, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Malta, Netherlands, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK. Number of full-time employees: 10. Number of volunteers: 7-member Executive Committee, and representatives from national organisations. Affiliations: European Anti-Poverty Network (EAPN); European Public Health Alliance (EPHA); Platform of European Social NGOs (Social Platform).

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BONE /

European Osteoporosis League (EOL) http://www.osteoporose-liga.eu Contact Person: Horst Döllinger

c/o Osteoporose Selbsthilfegruppen Dachverband (OSD) Hohe Strasse 38 99867 Gotha Germany

T: 0049-(0)3621-512-581 F: 0049-(0)3621-512-582 Email: info@osd-ev.org

Aims to become a European umbrella league for all osteoporosis associations, patient organisations and patients in Europe. Disseminates knowledge on osteoporosis, supports the implementation of EU projects on osteoporosis, and forms osteoporosis selfhelp groups across the continent.

“

Education and awareness of the treatment and prevention for the population (especially children and women) is the highest goal of the EOL. Our planned projects aim for intensive exchange of experience in the poorest rural regions.

Geographic remit: Europe (operates in 3 European Union countries—Germany, Poland, Slovakia—plus Ukraine). Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Number of members: Countries of members: Number of full-time employees: Number of volunteers: Affiliations: -

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GASTRO-INTESTINAL /

European Ostomy Association (EOA) http://www.ostomyeurope.org President: Arne Holte

c/o Deutsche ILCO Thomas Mann Strasse 40 53111 Bonn Germany

T: 0049-(0)-228-338-894-50 F: 0049-(0)-228-338-894-75 Email: info@ilco.de

A non-profitmaking, non-political, and religiously neutral organisation concerned only with the health and welfare of ostomates. Run by ostomates, and represents their viewpoints at European level. Distributes information and exchanges experiences, supports efforts to improve standards in ostomy care, and helps to found new national ostomy associations.

Geographic remit: Mainly Europe.

“

The Charter of Ostomates’ Rights is a very valuable document. The Charter tells clearly what needs the ostomate has, and it tells what services we want governments to give us. If you, as an ostomate, do not get this kind of service, you have work to do in your country.

Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: ConvaTec. Membership fees. Number of members: 32 member organisations from 28 European countries (plus several from non-European countries). Countries of members: Austria, Belgium, Bulgaria, Croatia, Czech Republic, Denmark, Estonia, Finland, France, Germany, Hungary, Iceland, Italy, Latvia, Lithuania, Luxembourg, Netherlands, Norway, Poland, Portugal, Romania, Serbia and Montenegro, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK. Number of full-time employees: Number of volunteers: Affiliations: International Ostomy Association (IOA).

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NEUROLOGICAL CONDITIONS /

European Pain Network (EPN) http://www.europeanpainnetwork.com Secretariat: Matthew Orman

Avenue de Tervuren 402 1150 Brussels Belgium

T: 0032-2-761-66-80 F: 0032-2-777-05-04 Email: -

Brings together patient organisations from around Europe to represent and support people with pain, raise awareness of their needs, and campaign to improve their lives. Calls to have pain treated as a disease in its own right, and works to eliminate the stigma surrounding long-term pain and its treatment.

“

The EPN will drive pain onto the political agenda, to ensure that pain gets the same urgency and focus as the underlying cause. The EPN supports the call by the European Federation of Chapters of the International Association for the Study of Pain (EFIC) to have pain treated as a disease in its own right.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Grünenthal; Mundipharma International. Non-pharma funding: Medtronic Foundation. Number of members: 15 patient organisations from 12 European countries. Countries of members: Belgium, Denmark, Finland, Germany, Ireland, Netherlands, Norway, Portugal, Spain, Sweden, Switzerland, UK. Number of full-time employees: Number of volunteers: Affiliations: -

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NEUROLOGICAL CONDITIONS /

European Parkinson’s Disease Association (EPDA) http://www.epda.eu.com Secretary General: Lizzie Graham

4 Golding Road Sevenoaks Kent TN13 3NJ UK

T: 0044-(0)-1732-457-683 F: Same number Email: info@epda.eu.com / lizzie@epda.eu.com

A non-religious, non-political, and non-profitmaking organisation concerned with the health and welfare of people living with Parkinson’s disease (PD), and their families and carers. Provides a forum for partnership, encourages constructive dialogue between international patient and neurological organisations and the pharmaceutical industry, and develops research projects into quality-of-life issues. Runs conferences for multidisciplinary teams, and for people of all ages with Parkinson’s.

Geographic remit: Europe.

“

The EPDA works to achieve the best-possible quality of life for people with Parkinson’s (and their carers). We enable patients and carers to draw on the finest caring practice from around the world, and provide access to the latest medical and surgical advice.

Annual funding / income (most recent): Pharmaceutical funding: Boehringer Ingelheim; Lundbeck; Merck Serono; Norgine; Solvay; Teva; UCB Pharma (all 2009). GSK points out that its 2008 donation of €55,000 represented 7% of the organisation’s revenue that year. Non-pharma funding: GE Healthcare; Medtronic. Foundation grants; membership fees. Number of members: 41 patient associations from 30 European countries. Countries of members: Austria, Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Lithuania, Luxembourg, Netherlands, Norway, Poland, Portugal, Romania, Serbia and Montenegro, Slovenia, Spain, Sweden, Switzerland, Turkey, UK. Number of full-time employees: None (4 freelancers). Number of volunteers: 7 Board members. Affiliations: European Disability Forum (EDF); European Federation of Neurological Associations (EFNA). EUROPEAN PATIENT GROUP DIRECTORY, 2009-2010 © BURSON-MARSTELLER / PATIENTVIEW

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GENERAL HEALTHCARE /

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

T: 0031-(0)6-36-062-039 F: Email: info@epecs.eu

A collaboration of regional patient organisations that aims to give its members (and all European patients) a powerful voice in Europe’s increasingly cross-border healthcare processes. Hopes to participate in the realisation of better conditions for cross-border and European-level care. Campaigns for the free movement of patients in the EU.

“

EPECS sees citizens (and not only those in border regions) as free citizens. Especially when they become patients, citizens want to act as free agents with equal rights, and do not wish to be regarded as ‘objects’ for the decisions of experts.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Number of members: 7 organisations from 3 European countries. Countries of members: Belgium, Germany, Netherlands. Number of full-time employees: None. Number of volunteers: Affiliations: -

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GENERAL HEALTHCARE /

European Patients’ Forum (EPF) http://www.eu-patient.eu Executive Director: Nicola Bedlington

Rue Belliard 65 1040 Brussels Belgium

T: 0032-2-280-23-34 F: 0032-2-231-14-47 Email: info@eu-patient.eu

The umbrella patients’ organisation at EU level. Brings together a broad range of leading European and national patients’ organisations in different disease areas. Representing the interests of over 150 million patients, the EPF is a key interlocutor with European institutions, and advocates for patients’ rights, participation, and involvement in EU healthcare developments.

“

The EPF promotes equal access to best-quality information and healthcare for EU patients, their carers and their families, and works to ensure meaningful patient involvement in EU health-related policy-making, programmes, and projects.

Geographic remit: Europe.

Annual funding / income (most recent): €589,000 (2008) Pharmaceutical funding: AstraZeneca; European Association of Pharmaceutical Full-line Wholesalers (GIRP); European Federation of Pharmaceutical Industries and Associations (EFPIA); GSK; MSD; Novartis; Pharmaceutical Research and Manufacturers of America (PhRMA); Pfizer. The EPF 2008 Annual Report lists sums donated. Non-pharma funding: GE Healthcare. Membership fees. Project funding from the European Commission. Number of members: 42 member organisations (31 full members, 4 provisional members, and 7 associate members) from 18 European countries. Members may be pan-European groups, with representation from across Europe, or national groups. Countries of members: Members are pan-European, and collectively have members in each EU Member State). Number of full-time employees: 6 (2 part-time). Number of volunteers: 8-person Board (and ongoing input from the membership). Affiliations: -

EUROPEAN PATIENT GROUP DIRECTORY, 2009-2010 © BURSON-MARSTELLER / PATIENTVIEW

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SCIENTIFIC RESEARCH /

European Platform for Patients’ Organisations, Science and Industry (EPPOSI) http://www.epposi.org Director: Giovanni Asta Square de Meeus Rue de l’Industrie 4 1000 Brussels Belgium

T: 0032-2-503-13-07 F: 0032-2-503-31-08 Email: info@epposi.org

A patient-led partnership with industry and academic science. Aims to bridge the gap between innovation and public health by exchange of information. Intends to establish a strong European alliance, jointly working on innovative healthcare policies and raising health outcomes.

Geographic remit: Europe.

“

EPPOSI provides a platform for consens us-b uil di ng throu g h discussion and the cultivation of partnerships between patients, academia, and industry (as well as among European and MemberState authorities), with the intention of converting publicpolicy issues and scientific developments into therapies for rare diseases.

Annual funding / income (most recent): Pharmaceutical funding: Actelion; Amgen; Baxter; Biogen Idec; Celgene; CSL Behring; Genzyme; Gilead; GSK; Hoffmann-La Roche; Institut de Recherches Internationales; Merck-Serono; Novartis; Pfizer; Servier; Shire HGT. Non-pharma funding: Ad-hoc support (public funds); donations (public or private); workshops. Number of members: 45, comprising 12 patient organisations, plus scientific bodies, and representatives from industry and industry associations. Countries of members: Patient group members are mainly pan-European organisations. Number of full-time employees: 3. Number of volunteers: 15. Affiliations: -

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INFECTIOUS /

European Polio Union (EPU) http://www.europeanpolio.eu Chairman: Johan Bijttebier

Walvisstraat 32 2018 Antwerpen Belgium

T: 0032-3-288-7794 F: Email: johan.bijttebier@telenet.be

A European umbrella organisation for national organisations that support people who have had polio, or who are coping with post-polio syndrome (PPS). Aims to empower those organisations, allowing them to learn from, and to help, each other. Intends to make treatment of PPS more equitable across Europe.

“

We plan to unite European medical professionals to create European guidelines, and to do research and collect data on post-polio syndrome, by creating a register, and by sharing information with patients and medical professionals.

Geographic remit: Europe. Annual funding / income (most recent): €7,000. Pharmaceutical funding: Non-pharma funding: Membership fees. Number of members: 15 member organisations from 12 European countries. Countries of members: Belgium, Denmark, Finland, France, Germany, Ireland, Italy, Netherlands, Norway, Spain, Sweden, UK. Number of full-time employees: None. Number of volunteers: 7. Affiliations: European Federation of Neurologica Associations (EFNA); European Organisation for Rare Diseases (EURORDIS).

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PUBLIC HEALTH /

European Public Health Alliance (EPHA) http://www.epha.org Secretary General: Monika Kosinska

Rue de Trèves 49-51 1040 Brussels Belgium

T: 00-32-2-230-30-56 F: 00-32-2-233-38-80 Email: epha@epha.org

A network of local, national, and international nongovernmental organisations and other non-profit organisations active in the field of public health in Europe. Liaises with political groups to support the creation of a Parliamentary intergroup on public health and healthcare, to encourage cross-party debate on these key issues.

Geographic remit: Europe. Annual funding / income (most recent): €452,000 (2007).

“

The EPHA is an active, articulate champion of its core interests—the promotion and protection of the health of all people living in Europe. The EPHA seeks constructive dialogue with institutions and policymakers, and acts as a channel of communication, to voice concerns arising from the public-health sector.

Pharmaceutical funding: Non-pharma funding: European Commission (50%); membership fees (15%); non EC-funded projects (15%); others (15%) (2007). Number of members: About 100 member associations from 22 European countries. Members may be panEuropean groups, with representation from across Europe, or national groups. Countries of members: Albania, Austria, Belgium, Bulgaria, Croatia, Cyprus, Finland, France, Germany, Italy, Lithuania, Malta, Netherlands, Norway, Portugal, Romania, Serbia and Montenegro, Slovenia, Spain, Switzerland, Turkey, UK. Number of full-time employees: 10. Number of volunteers: Affiliations: - Civil Society Contact Group - EU Health Forum; Health and Environment Alliance (HEAL); Platform of European Social NGOs (Social Platform). EUROPEAN PATIENT GROUP DIRECTORY, 2009-2010 © BURSON-MARSTELLER / PATIENTVIEW

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MENTAL HEALTH /

European Regional Network for User-Led Projects (User-Run Network; URN) http://www.user-run-network.nl Founders: Ursula Potjer and Christel Stevens

c/o Ggnet Postbus 2003 7230 GC Warnsveld Netherlands

T: 0031-(0)-575-580-808, ext. 537 F: Email: urnetwork@ggnet.nl

A group of (ex-) users of mental health services building a European network that details local consumer-run projects for users and ex-users of mental health services. Supplies information about the local projects, raises public awareness, and runs an Internet discussion group.

“

We want to facilitate the exchange of information about European user-led projects. All URN members are the owners of this project, and they should give shape to it together.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Number of members: Projects in 6 European countries. Countries of members: Austria, France, Germany, Netherlands, Romania, UK. Number of full-time employees: None. Number of volunteers: 6. Affiliations: GGNet.

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REPRODUCTIVE / SEXUAL HEALTH /

European Sexual Health Alliance (ESHA) http://www.essm.org/esda/general.asp President: Irem Hattat

Avenida de Menendez Pelayo 75 Bajo derecha 3 28007 Madrid Spain

T: 0034-91-501-9513 F: 0034-91-501-9668 Email: info-esda@salud-sexual.org

An umbrella group of patient support helplines throughout Europe. Aims to assist patients suffering from sexual dysfunction, and to provide awareness and understanding of the condition to patients’ partners, the media, and other interested parties. Undertakes community-based research into aspects of sexual dysfunction.

“

The ESDA is unique in that it proactively engages with patient target audiences and the media, using a range of educational resources to raise awareness of sexual dysfunction, its management and treatments.

Geographic remit: Mainly Europe. Annual funding / income (most recent): Pharmaceutical funding: Projects have been supported by pharmaceutical companies. Non-pharma funding: Each country’s patient organisation is responsible for its own management and funding. Number of members: 13 patient support groups, each with an ESHA helpline, from 12 European countries. Countries of members: Denmark, Finland, France, Germany, Greece, Ireland, Italy, Portugal, Spain, Sweden, Turkey, UK. Number of full-time employees: None. Number of volunteers: Affiliations: European Society for Sexual Medicine (ESSM).

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MENTAL HEALTH /

European Society for Mental Health and Deafness (ESMHD) http://www.esmhd.org Manager: Renata Sarmento

ESMHD office c/o Palestina, 8 P.1, 3° A 28100 Alcobendas Madrid Spain

T: 0034-64-68-56-067 F: Email: manager@esmhd.org / esmhdmanager@yahoo.es

An NGO that promotes the positive mental health of deaf people in Europe. Facilitates networking and the exchanges of personnel and expertise between countries, especially with its online discussion board. Runs an international congress every three years (the most recent being held in October 2009).

Geographic remit: Europe.

“

In spite of progress, the majority of deaf Europeans do not have equal access to mental-health services at all levels. Too many countries have limited, or no, specialist professional expertise in the mental-health needs of deaf people. The ESMHD aims for mental-health practice in Europe to be appropriate to deaf people's needs.

Annual funding / income (most recent): Pharmaceutical funding: Eli Lilly. Non-pharma funding: Beyond Blue; Cochlear; Mental Health Council of Australia; Queensland Government. Membership fees. Number of members: 33 member organisations and individual members from 12 European countries. Countries of members: Austria, Belgium, Denmark, Finland, France, Germany, Ireland, Netherlands, Norway, Spain, Sweden, UK. Number of full-time employees: Number of volunteers: Affiliations: European Disability Forum (EDF).

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GENETIC / RARE DISEASES /

European Society for Phenylketonuria and Allied Disorders treated as Phenylketonuria (E.S.PKU) http://www.espku.org Secretary: Tobias Hagedorn Wilhelm-Mellies-Strasse 10 32120 Hiddenhausen Germany

T: F: Email: info@espku.org

An umbrella organisation of representatives of people with phenylketonuria (PKU) who have come together to improve the quality of life of those afflicted 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.

Geographic remit: Europe. Annual funding / income (most recent): -

“

The continuing aim of the E.S.PKU must be to ensure the best-possible treatment and quality of life for all people afflicted, irrespective of age or location. The E.S.PKU has to convince government authorities and insurance companies that treatment is essential for all people afflicted.

Pharmaceutical funding: Non-pharma funding: Advertisements by specialist dietary products companies in E.S.PKU News; membership fees; public donations; sponsorship. Number of members: 28 member patient associations from 27 European countries. Countries of members: Austria, Croatia, Czech Republic, Denmark, Estonia, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Moldova, Netherlands, Norway, Poland, Portugal, Romania, Serbia and Montenegro, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK. Number of full-time employees: Number of volunteers: 5. Affiliations: -

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NEUROLOGICAL / DISABILITY

European Spinal Cord Injury Federation (ESCIF) http://www.escif.org President: Dr Daniel Joggi

c/o Swiss Paraplegic Association Kantonsstrasse 40 6207 Nottwil Switzerland

T: 0041-(0)41-939-54-03 F: 0041-(0)41-939-54-39 Email: secretary@escif.org

A 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 its members.

“

The vision of the Federation is to improve the quality of life of people in all parts of Europe who are living with a spinal cord injury.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Congress income (Artweger; Helopal; Keuco; Montavit; Paravan; Salzburger Land; Hansa; Weigl-Liftsysteme); members’ fees. Number of members: 21 member organisations from 20 European countries. Countries of members: Albania, Austria, Belgium, Bosnia-Herzegovina, Croatia, Denmark, Finland, France, Germany, Ireland, Italy, Lithuania, Netherlands, Portugal, Romania, Slovenia, Spain, Sweden, Switzerland, UK. Number of full-time employees: None. Number of volunteers: Affiliations: -

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DISABILITY /

European Union of the Deaf (EUD) http://www.eud.eu Executive Director: Mark Wheatley

Microbusiness Center 15 Rue de la Loi-Wetstraat 26 1040 Brussels Belgium

T: F: 0032-2-282-46-09 Email: mark.wheatley@eudnet.org

The only organisation representing 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. Establishes EU-level dialogues, making sure that deaf issues are raised in consultation with national deaf associations’ members.

“

Emancipation and equal opportunities are key philosophies in our work towards achieving an equal position in society—with recognition of deaf people as full citizens in our own right.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: European Commission; membership fees. Number of members: 33 member groups from 32 European countries. Countries of members: Austria, Belgium, 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 and Montenegro, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK. Number of full-time employees: Number of volunteers: A number of volunteers. Affiliations: European Disability Forum (EDF).

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REPRODUCTIVE / SEXUAL HEALTH / YOUTH

European Youth Network on Sexual and Reproductive Rights (YouAct) http://www.youact.org Coordinator: Mia Hessel c/o World Population Foundation (WPF) Vinkenburgstraat 2A 3512 AB Utrecht Netherlands

T: 0031-(0)-30-239-38-88 F: 0031-(0)-30-239-38-60 Email: info@youact.org

A 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, to have access to condoms when needed, and are able to decide upon how many children they want.

“

YouAct is fighting on a political level for the sexual and reproductive rights of young people. We do this through advocacy, awareness-raising and information sharing. Our task forces empower young people to stand up for their own rights through training and collaboration.

Geographic remit: Europe (and worldwide). Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: AIDS Fund; Catholics For Free Choice; Choice for Youth and Sexuality; Cordaid; Dutch Directorate General of International Cooperation; European Youth Foundation; Face to face; Marie Stopes International; OrganonUNFPA; Youth Coalition; Summit Foundation; World Population Foundation (WPF). Number of members: 21 advocates or representatives from 13 European countries. Countries of members: Bulgaria, Cyprus, Denmark, Finland, Germany, Ireland, Italy, Lithuania, Poland, Portugal, Sweden, Turkey, UK. Number of full-time employees: 1. Number of volunteers: All members are volunteers. Affiliations: -

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MENTAL HEALTH /

Euro-Psy-Rehabilitation (EUROPSY) http://www.europsy.be General Secretary: Marc Garcet

c/o AIGS 84 Rue Saint-Lambert 4040 Herstal Belgium

T: 0032-4-228-89-81 F: 0032-4-227-73-65 Email: europsy@europsy.be

Develops inter-institutional European exchange in the field of social, professional, and economic rehabilitation of people with a mental-health difficulty. Promotes European programmes, and organises study visits and European seminars.

“

Re-adaptation and re-integration must lead the individual away from the status of patient—dependent on the healthcare structure—to the status of consumer, negotiator, active agent, and worker. In other words, a citizen who exercises his rights.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: European Commission; membership fees. Number of members: Member groups and individuals from 15 European countries. Countries of members: Austria, Belgium, Finland, France, Germany, Greece, Luxembourg, Netherlands, Norway, Poland, Portugal, Romania, Slovenia, Spain, UK. Number of full-time employees: Number of volunteers: Affiliations: Association Interrégionale Guidance et de Santé (AIGS); European Disability Forum (EDF).

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GENETIC / RARE DISEASES /

EURORDIS (European Organisation for Rare Diseases) http://www.eurordis.org Chief Executive Officer: Yann le Cam

c/o Plateforme Maladies Rares 102 rue Didot 75014 Paris France

T: 0033-1-56-53-52-10 F: 0033-1-56-53-52-15 Email: eurordis@eurordis.org

A patient-driven alliance of patient organisations working in the area of rare diseases. Dedicated to improving the quality of life of Europeans living with rare diseases. Aims to build a strong pan-European community of rare-disease patient organisations and people living with rare diseases, and works to act as their voice at European level.

“

EURORDIS is focusing on the challenges ahead—the need to make rare diseases a public-health priority, and the need for National Plans for Rare Diseases in every country in Europe.

Geographic remit: Europe. Annual funding / income (most recent): €2.1m (2008). Pharmaceutical funding: 23% of 2008 revenue from: Actelion OTL Pharma; Alexion Europe; Baxter International Foundation; CSL Behring; Drug Information Association (DIA); French Pharmaceutical Companies Association (LeeM); Genzyme; Novartis; Pharmion; Promocell; Shire; Sigma-Tau Pharmaceuticals; Swedish Orphan International. GSK points out that its 2008 donation of €15,000 represented 0.6% of the organisation’s revenue that year. Non-pharma funding: Association Française contre les Myopathies (AFM) (36% of 2008 revenue); European Commission (11% of 2008 revenue); Fonds Léa Rose; King Baudouin Foundation; Medtronic Foundation; Membership fees. Number of members: Pan-European member organisations and national patient associations (more than 300) from 29 European countries. Countries of members: Austria, Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Luxembourg, Malta, Netherlands, Norway, Poland, Portugal, Romania, Serbia and Montenegro, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK. Number of full-time employees: 17 full-time equivalent staff. Number of volunteers: 12-member Board of Directors, and at least 55 volunteer translators. Together, they represent 2.7 full-time equivalents. Affiliations: European Patients’ Forum (EPF); European Platform for Patients’ Organisations, Science and Industry (EPPOSI). EUROPEAN PATIENT GROUP DIRECTORY, 2009-2010 © BURSON-MARSTELLER / PATIENTVIEW

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DISABILITY /

EuroTinnitus Association (EUROTA) http://www.eurotinnitus.com President: Jeannot Pesché

9 Rue des Jardins 4591 Differdange Luxembourg

T: 00352-2040-1410 F: 00352-2040-2303 Email: contact@eurotinnitus.com

An inter-regional patient organisation that promotes research in Europe into all innerear diseases. Provides information, and runs an online forum. Founders are mostly tinnitus patients.

Geographic remit: Europe. Annual funding / income (most recent): -

“

We cannot change today’s medical stand within a couple of days. But we can, with the help of all our members who understand what’s up, and that something has to be done—yes, we can change things, if they all give us the needed support. The more people help, the stronger we are.

Pharmaceutical funding: Non-pharma funding: Membership fees. Number of members: 6 members from 3 European countries. Countries of members: Belgium, France, Luxembourg. Number of full-time employees: Number of volunteers: 7-person Executive Board. Affiliations: -

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GENETIC / RARE DISEASES /

Fabry International Network (FIN) http://www.fabryintnetwork.com Secretary: Ed Koning

Soere Titlestad 111, 5243 Fana, Bergen, Norway or Erica Schenk, Boelenkamp 10, 8431 BI Oosterwolde, Netherlands

T: 0047-55-99-00-46 / 0031-516-523-773 F: Email: FINSecretary@myconnect.org

An organisation and network that collaborates with individual national Fabry patient organisations to improve the lives of Fabry patients (and their families and care givers). Educates the public about Fabry disease, promotes best practises for diagnosing and treating Fabry patients, and helps establish national Fabry patient organisations. Provides an independent forum for all Fabry patient organisations.

“

FIN is transparent, independent, neutral, and operates with integrity—with patients' needs its only focus.

Geographic remit: Europe (and other parts of the world). Annual funding / income (most recent): Pharmaceutical funding: Actelion Pharmaceuticals; Amicus Therapeutics; Genzyme; Shire. Non-pharma funding: Interaction Institute for Social Change; Sanders and Clients Consulting. Number of members: 23 member groups from 14 European countries. Countries of members: Belgium, Denmark, Finland, France, Italy, Lithuania, Netherlands, Norway, Poland, Portugal, Spain, Sweden, Switzerland, UK. Number of full-time employees: None. Number of volunteers: 5. Affiliations: European Organisation for Rare Diseases (EURORDIS).

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AUTO IMMUNE / IMMUNE DISEASES / SKIN

Federation of European Scleroderma Associations (FESCA) http://www.fesca-scleroderma.eu Secretary: Ana Pando

33 Rue Marcel Baudry 7503 Froyennes Belgium

An umbrella patient organisation linking scleroderma support groups throughout the EU. An informational clearing house for patients and the medical community, FESCA educates Europe and its medical community about scleroderma, and facilitates collaboration among national associations to share ideas and promote research. FESCA aims to make scleroderma a well-known disease, and, in collaboration with doctors, to secure for people with the condition the bestpossible treatments and care, and—ultimately—a cure. For governments, politicians, doctors, the pharmaceutical industry, and the media, FESCA will be the main focal point for all enquiry.

Geographic remit: Europe.

“

T: 0032-20-8965-4094 F: Email: info@fesca-scleroderma.eu

Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: FESCA states that it is actively seeking sponsorship. Number of members: 18 member associations from 13 European countries. Countries of members: Belgium, Cyprus, Denmark, France, Germany, Hungary, Ireland, Italy, Netherlands, Portugal, Spain, Switzerland, UK Number of full-time employees: None. Number of volunteers: Affiliations: European Organisation for Rare Diseases (EURORDIS).

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GENETIC / RARE DISEASES /

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

T: 0044-(0)1483-548-900 F: Email: paul.pyck@skynet.be

Formed by organisations around Europe that share the aim of improving the lives of people with Williams syndrome (a rare disorder caused by an abnormality in chromosomes). Spreads awareness of Williams syndrome, and promotes scientific research projects.

“

We build and reinforce our links within the European Community, provide learning and holiday opportunities, and translate documents on Williams syndrome into Member States' languages.

Geographic remit: Europe. Annual funding / income (most recent): €1,900 (2008). Pharmaceutical funding: Non-pharma funding: Membership subscriptions. Number of members: 12 member organisations from 12 European countries. Countries of members: Belgium, France, Germany, Hungary, Ireland, Italy, Norway, Romania, Slovakia, Spain, Sweden, UK. Number of full-time employees: None. Number of volunteers: 12. Affiliations: European Organisation for Rare Diseases (EURORDIS).

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REPRODUCTIVE / SEXUAL HEALTH /

Fertility Europe (FE) http://www.fertilityeurope.eu Chairperson: Conrad Engler

Rijsenbergstraat 150 9000 Ghent Belgium

T: F: Email: info@fertilityeurope.eu

A democratic association that aims to build a strong 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 conceive—focusing on areas such as access to high-quality infertility investigation, treatment, support and guidance.

“

FE is a young initiative with great potential. It is much different from an informal ‘network’. It is a new, unique, democratic, transparent and independent organisation with courageous aims and goals.

Geographic remit: Europe. Annual funding / income (most recent): -

Pharmaceutical funding: Non-pharma funding: European Society of Human Reproduction and Embryology (ESHRE). Membership fees. Number of members: 18 full and associate member organisations from 15 European countries. Countries of members: Belgium, Czech Republic, Finland, France, Greece, Hungary, Italy, Netherlands, Norway, Poland, Slovakia, Spain, Switzerland, Turkey, UK. Number of full-time employees: None. Number of volunteers: Everyone active in FE operates on a voluntary basis. Affiliations: -

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MENTAL HEALTH /

GAMIAN-Europe (Global Alliance of Mental Illness Advocacy Networks-Europe; GE) http://www.gamian.eu Information and Communication Officer: Dorothy Micallef

GAMIAN-Europe Secretariat c/o 424 St. Joseph High Street St. Venera SVR1013 Malta

T: 00356-21-440-456 F: Email: dorothy@richmond.org.mt

Promotes information, education and awareness by organising a yearly European convention, regional seminars, and a newsletter. Supports and engages in research projects on mental illness, and helps in the dissemination of results. Assists member organisations, and develops training for members.

“

As the EU is getting more important in relation to health policy development, GE is continuing advocacy and outreach efforts. We are in the process of becoming the voice of people affected by mental health (as we set out to do in the first place). GE is becoming more credible and more visible—and, thanks to our members, more representative.

Geographic remit: Mainly Europe. Annual funding / income (most recent): €117,000 (2008), according to the ETI Register. Pharmaceutical funding: Astra Zeneca; Eli Lilly Benelux; GSK; Pfizer Europe (each donating €15,000€25,000 in 2009). GSK points out that its 2008 donation of €25,000 represented 23% of the organisation’s revenue that year. Non-pharma funding: Membership fees. Number of members: Over 80 member organisations from 28 European countries. Countries of members: Austria, Belgium, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Malta, Netherlands, Norway, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, Turkey, UK. Number of full-time employees: Number of volunteers: Affiliations: European Patients’ Forum (EPF); European Platform for Patients’ Organisations, Science and Industry (EPPOSI). EUROPEAN PATIENT GROUP DIRECTORY, 2009-2010 © BURSON-MARSTELLER / PATIENTVIEW

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REPRODUCTIVE / SEXUAL HEALTH / WOMEN

Global Campaign Europe (GCE) http://www.global-campaign.org/GCEurope.htm European Coordinator: Rebekah Webb

3rd floor 98 rue du Trone 1050 Brussels Belgium

T: 0032-(0)2-507-1229 F: 0032-(0)2-507-1222 Email: rwebb@global-campaign.org

The European arm of the Global Campaign for Microbiocides. A broad-based, international effort to build support among policymakers, opinion leaders, and the general public for increased investment into microbiocides and other user-controlled prevention methods. Works through advocacy, policy analysis, and social-science research to accelerate product development, facilitate widespread access and use, and protect the needs and interests of users.

“

We build European political support for increased investment in microbiocide research and development, create a supportive policy environment in Europe for the development, introduction and use of microbiocides, and prepare European NGOs to advocate on behalf of end-users.

Geographic remit: Europe (and worldwide). Annual funding / income (most recent): -

Pharmaceutical funding: Non-pharma funding: Donors to the parent body, the GCM: Bill and Melinda Gates Foundation; European Commission; Ford Foundation; International Partnership for Microbiocides; Joint United Nations Programme on HIV/AIDS (UNAIDS); Moriah Fund; UK Department for International Development; US Agency for International Development; United Nations Population Fund (UNFPA). Number of members: 22 partner organisations and 31 endorsing organisations from 13 European countries. Countries of members: Belgium, Denmark, Finland, France, Germany, Iceland, Ireland, Netherlands, Norway, Portugal, Spain, Sweden, UK. Number of full-time employees: 2 in Europe. Number of volunteers: Affiliations: Global Campaign for Microbicides (GCM).

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CANCER /

Global Gist-Network (GGN) http://www.globalgist.org European Co-ordinator: Markus Wartenberg

c/o Das Lebenhaus. Usa-Strasse 1 61231 Bad Nauheim Germany

T: 0049-6032-9492-881 F: 0049-6032-9492-885 Email: globalgistnet@lebenshauspost.org / info@globalgist.org

An informal network of organisations specialising in GIST that aims to act as a patient forum, allowing patients in any given country to access relevant local information, and to gain the advantage of mutual support and advocacy. Lists GIST experts and available clinical trials.

“

Research in the subject area of GIST is very fast moving. Therefore, recent information is important. Because of this, we have tried to provide a date for the key information we provide. Such dates appear in the texts on our website, wherever appropriate.

Geographic remit: Worldwide (including Europe). Annual funding / income (most recent): The GGN notes that, as an informal network, it has no funding. Pharmaceutical funding: Non-pharma funding: Supported courtesy of its two main founder organisations (Das Lebenshaus and the Life Raft Group Association). Number of members: 10 member organisations from 10 European countries, plus 6 individuals acting as liaison in another 6 European countries. Countries of members: Belgium, Cyprus, France, Germany, Hungary, Ireland, Italy, Lithuania, Netherlands, Norway, Poland, Romania, Spain, Switzerland, Turkey, UK. Number of full-time employees: Number of volunteers: People who work for the GGN do so on a voluntary basis. Affiliations: Association of Cancer Online Resources (ACOR).

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CANCER /

Global Lung Cancer Coalition (GLCC) http://www.lungcancercoalition.org Secretary/Secretariat: Jesme Fox

GLCC Secretariat c/o the Roy Castle Lung Cancer Coalition Rothesay House 134 Douglas Street Glasgow, G2 4HF, UK

T: 0044-(0)141-331-0580 F: 0044-(0)141-331-0590 Email: glcc@roycastle.org

Promotes global understanding of lung cancer, and raises lung cancer awareness. Provides a forum for members to network, share ideas, and to learn from each others’ initiatives.

“

As the international 'voice' of lung cancer patients, the GLCC is committed to increasing awareness and de-stigmatising the disease among patients, the medical community, policymakers, the general public, and the media, by delivering highquality information and programmes through its member groups.

Geographic remit: Europe (and worldwide). Annual funding / income (most recent): Pharmaceutical funding: Companies donating £30,000 [approximately €34,000] or more in 2009: AstraZeneca; Eli Lilly; GSK; Novartis. Non-pharma funding: Number of members: 26 member patient groups from 12 European countries. Countries of members: Denmark, France, Germany, Ireland, Italy, Netherlands, Norway, Slovenia, Spain, Sweden, Switzerland, UK. Number of full-time employees: Number of volunteers: Affiliations: -

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CIVIC / CONSUMER WITH INTEREST IN HEALTHCARE /

Health Action International–Europe (HAI-Europe) http://www.haiweb.org/01_about_europe_a.htm Contact person: Teresa Alves

Overtoom 60/II 1054 HK Amsterdam Netherlands

T: 0031-(0)20-683-36-84 F: 0031-(0)20-685-50-02 Email: info@haiweb.org

A research and advocacy organisation that specialises in the concept of essential medicines and in the rational employment of medicines. Campaigns on behalf of greater access to essential medicines. Member organisations include consumers, public-interest NGOs, healthcare providers, academics, the media, and individuals.

Geographic remit: Europe.

“

Whether working locally, nationally, regionally, or internationally, HAIEurope reaches its goals by campaigning and information sharing, and by conducting research, workshops and training.

Annual funding / income (most recent): Parent (HAI): €1.6m (2008). Pharmaceutical funding: HAI states that it does not accept funding from commercial bodies. Non-pharma funding: Netherlands Ministry of Foreign Affairs; Open Society Institute (OSI); World Health Organization (WHO). Membership fees. Number of members: 32 member organisations from 15 European countries. Countries of members: Belgium, Cyprus, Finland, France, Germany, Greece, Hungary, Latvia, Moldova, Netherlands, Poland, Spain, Sweden, Switzerland, UK. Number of full-time employees: 2.3 full-time equivalent staff (2008). Number of volunteers: Affiliations: European Public Health Alliance (EPHA).

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PUBLIC HEALTH /

Health and Environment Alliance (HEAL) http://www.env-health.org Executive Director: Génon Jensen

Boulevard Charlemagne 28 1000 Brussels Belgium

T: 0032-2-234-36-40 F: 0032-2-234-36-49 Email: info@env-health.org

A network of citizens’, patients’, women’s, health professionals’ and environmental organisations from across Europe. Raises awareness of how environmental protection improves health. Works to strengthen EU policies in favour of better protection of health and the environment.

“

The HEAL ensures co-operation among patients’, consumers’ and citizens’ organisations, public-health and healthpromotion agencies, and organisations representing carers, professionals, academics, and other organisations active in the field of environment and health, public health at a local, national and European level, to provide mutual support and the formation of coalitions on relevant issues.

“

Geographic remit: Mainly Europe.

Annual funding / income (most recent): €669,000 (2007-2008), according to the ETI Register. Pharmaceutical funding: Non-pharma funding: In 2007-2008: donations (€223,000); European Commission (€383,000); members’ contributions (€56,000). Number of members: 56 national, European or international member organisations from 20 European countries. Countries of members: Belgium, Bulgaria, Croatia, Czech Republic, France, Germany, Hungary, Ireland, Italy, Luxembourg, Malta, Macedonia, Netherlands, Poland, Romania, Serbia and Montenegro, Slovenia, Sweden, Switzerland, UK. Number of full-time employees: 11. Number of volunteers: Affiliations: Green 10. EUROPEAN PATIENT GROUP DIRECTORY, 2009-2010 © BURSON-MARSTELLER / PATIENTVIEW

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GENERAL HEALTHCARE /

Health Care Without Harm Europe (HCWH Europe) http://www.noharm.org/europe Development Director: Paul Whaley

The European element of a global coalition working to transform the healthcare industry so that, without compromising patient safety or care, it is ecologically sustainable and offers no harm to people or the environment. Aims to ensure that patients, healthcare workers, and communities can access information about chemicals used in healthcare, and can participate in decisions about chemical exposures. Maintains an online library on environmentally-responsible healthcare.

“

T: 0032-(0)-22-891-040 F: Email: europe@hcwh.org

“

1 Rue de la Pepiniere B1000 Brussels Belgium

We allow you to stay up to date on developments in environmental-health issues and what they mean for health and healthcare. Our issues include pharmaceuticals, food, chemicals, and medical waste.

Geographic remit: Mainly Europe. Annual funding / income (most recent): €467,000 (2007).

Pharmaceutical funding: HCWH states that it does not accept financial support from manufacturers. Non-pharma funding: In 2007: European Commission; Health Care Without Harm; member organisations' donations; private foundations (Ecology Center; Global Greengrants Fund; King Baudouin Foundation). Number of members: 50 member organisations (including government bodies and professional societies) from 20 European countries. Countries of members: Austria, Belgium, Czech Republic, Denmark, Finland, France, Germany, Ireland, Italy, Macedonia, Moldova, Netherlands, Poland, Romania, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK. Number of full-time employees: 6. Number of volunteers: Affiliations: Health Care Without Harm (HCWH); Health and Environment Alliance (HEAL).

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PUBLIC HEALTH /

Health First Europe (HFE) http://www.healthfirsteurope.org Contact person: Patricia Lamas Sánchez

Chaussee de Wavre 214 D 1050 Brussels Belgium

T: 0032-2-626-19-99 F: 0032-2-626-95-01 Email: info@healthfirsteurope.org

An awareness-raising platform for patient groups, healthcare workers, academics, experts and industry in the field of medical technology.

“

We aim to ensure that equitable access to modern, innovative, and reliable medical technology and healthcare is regarded as a vital investment in the future of Europe. We call for truly patient-centred healthcare, and believe that every European citizen should benefit from the best medical treatments available.

Geographic remit: Europe. Annual funding / income (most recent): €220,000 (2007), according to the ETI Register.

Pharmaceutical funding: Non-pharma funding: In 2007: membership contributions totalling €220,000 from 4 members, according to the ETI Register. In 2008, donations from two members: Eucomed; European Union of Private Hospitals (UEHP). Number of members: 21 pan-European healthcare-focused associations (several of which are patient groups). Countries of members: Number of full-time employees: 2. Number of volunteers: Affiliations: -

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DISABILITY /

Hear-it AISBL (HEAR-IT) http://www.hear-it.org General Secretary: Kim Ruberg

Avenue Tervuren 35 1040 Brussels Belgium

T: 0032-477-53-25-89 / 0045-40-300-500 F: Email: hear-it@hear-it.org

An international non-profit and non-commercial organisation that disseminates 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 publishes http://www.hearit.org, the world’s largest website on hearing and hearing loss.

Geographic remit: Europe.

“

Hear-it AISBL deals with almost any issue related to hearing impairment, including prevention of hearing loss, the consequences of hearing impairment for the individual and for society, advice and practical information for hearing-impaired people, and information and advice for relatives and colleagues.

Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Number of members: 3 international bodies: 1 professional society, 1 industry association, and IFHOH (International Federation of the Hard Of Hearing). Countries of members: Number of full-time employees: Number of volunteers: Affiliations: -

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CIRCULATORY / HEART DISEASE /

HEART EU (Hyperlipidaemia Education Atherosclerosis Research Trust Foundation) http://www.hearteu.org Chairman: Michael Livingston

c/o HEART UK 7 North Road Maidenhead Berkshire SL6 1PE UK

T: 0044-(0)-1628-637-280 F: 0044-(0)1628-628-698 Email: rm@hearteu.org

A European patient network form ed b y fou r na tio nal cholesterol organisations. Aims to see an end to premature and unnecessary heart disease.

“

The HEART EU network helps in the prevention and risk management of inherited cardiovascular disease, particularly where inherited high cholesterol is concerned. HEART EU develops strategic programmes for an improved healthcare future in Europe. The Foundation assists new EU countries to form patient organisations that interact and partner with health professionals, governments, the corporate sector, and others in the 'third sector'.

Geographic remit: Europe. Annual funding / income (most recent): £100,000 [approximately €113,000]. Pharmaceutical funding: Non-pharma funding: Number of members: 4 member organisations from 4 European countries. Countries of members: Netherlands, Norway, Spain, UK. Number of full-time employees: Number of volunteers: Affiliations: European Platform for Patients’ Organisations, Science and Industry (EPPOSI).

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OLDER PEOPLE /

HelpAge International (HAI) http://www.helpage.org Chief Executive Officer: Richard Blewitt

1st Floor, York House 207-221 Pentonville Road London N1 9UZ UK

T: 0044-(0)20-7278-7778 F: 0044-(0)20-7713-7993 Email: info@helpage.org

A network of NGOs striving for the rights of disadvantaged older people to economic and physical security; healthcare and social services; and support in their caregiving role. Ensures that the voices of older people are heard by helping older people participate in the research, programmes, and advocacy that benefit them.

“

HAI helps older people claim t h e i r ri g hts , c ha l l e n g e discrimination, and overcome poverty, so that they can lead dignified, secure, active and healthy lives.

Geographic remit: Although mainly global, does conduct programmes in Eastern Europe. Annual funding / income (most recent): £16.6m [approximately €18.8m] (2007-2008). Pharmaceutical funding: Non-pharma funding: 2007-2008: Big Lottery Fund; Comic Relief; Department for International Development; Irish Aid; European Commission (£2.1m) [approximately €2.3m]; Help the Aged. Number of members: 14 affiliate organisations from 11 European countries. Countries of members: Czech Republic, Denmark, Germany, Ireland, Lithuania, Malta, Moldova, Netherlands, Serbia, Slovenia, UK. Number of full-time employees: 310, including overseas staff on local contracts. Number of volunteers: Affiliations: -

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HIV / AIDS /

HIV Europe http://www.hiveurope.org Chairman: Henrik Arildsen

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

T: 0045-33-32-58-68 F: Email: henrikarildsen@hiveurope.org

A network of patient organisations committed to the principle of the greater involvement of people living with HIV and AIDS in the development of public policy and the delivery of services. Subjects on HIV Europe’s agenda for action include quality of life, employment and employability, criminalisation, mobility and freedom of travel, and positive prevention.

“

HIV Europe is driven by issues affecting people living with HIV. Experience is shared across a broad partnership of organisations devoted to the involvement of people with HIV and AIDS at the centre of the formulation and implementation of public policies.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Gilead. Non-pharma funding: Number of members: 22 member associations from 20 European countries. Countries of members: Albania, Croatia, Czech Republic, Denmark, Estonia, Finland, Greece, Hungary, Iceland, Italy, Lithuania, Norway, Poland, Portugal, Romania, Serbia, Sweden, Switzerland, Turkey, UK. Number of full-time employees: Number of volunteers: Affiliations: Many member organisations are also members of the European AIDS Treatment Group (EATG).

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ENDOCRINE /

Hypoparathyroidism Europe (HPTH Europe) http://www.hypoparathyroidism.net / http://www.hpth.net [still under construction] President: Gudrun Ruth Vidarsdottir Holtsgata 33 101 Reykjavik Iceland

T: 00354-663-06-38 / 00354-564-02-38 F: Email: gudrunruth@internet.is

Aims to build a strong pan-European community of patient organisations for people living with hypoparathyroidism (HPTH). Intends to be this community’s voice at the European level, and, directly or indirectly, to fight against the impact of HPTH by improving access to information, to services, to diagnosis, to good treatment and care, and by promoting research and the exchange of good practices.

“

HPTH Europe was established in June 2007 to get better treatments and orphan drugs for all patients in Europe suffering from HPTH, and to get the PTH hormone approved for these patients, and available to everyone who needs it.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: HPTH Europe states that it has no sources of funding yet. Number of members: Approximately 250 individual members from 6 European countries. Countries of members: Denmark, Finland, Iceland, Norway, Sweden, UK. Number of full-time employees: Number of volunteers: Affiliations: European Organisation for Rare Diseases (EURORDIS).

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GENERAL HEALTHCARE /

Iatrogenic Europe Unite (IEU-Alliance) http://www.ieu-alliance.org Co-ordinator: Eamon Duffy

c/o the Action on Medical Negligence Association (AMNA) 27 Woodford Drive Armagh UK

T: 0044-(0)-2837-527-307 F: Email: amnarayni@hotmail.com

An alliance of seven European patient groups each actively 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. Has drawn up an IEU-Alliance Declaration to promote patient safety.

“

Urgent dialogue is required with damaged patients, their support groups, and with health professionals and politicians on the unnecessary problems facing the iatrogenic patient—the most immediate being arranging genuine specialist remedial care.

Geographic remit: Europe (and international). Annual funding / income (most recent): IEU-Alliance states that it has no revenue at present. Pharmaceutical funding: Non-pharma funding: Number of members: 7 national member groups from 4 European countries. Countries of members: Germany, Ireland, Netherlands, UK. Number of full-time employees: Number of volunteers: 2 (co-ordinator and webmaster). Affiliations: -

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GENERAL HEALTHCARE /

Iatrogenic Europe Unite-Alliance (IEU-Alliance) http://www.ieu-alliance.eu Chairwoman: Sophie Hankes

Address: The Netherlands

T: F: Email: office@ieu-alliance.eu

Champions patients in Europe who are victims of serious medical error, and lobbies European government bodies with the aim of encouraging them to make the prevention of medical mistakes a statutory obligation. Drew up a Declaration of Patients’ Rights in 2005, aiming to ensure that patients are fully protected within healthcare systems.

Geographic remit: Europe.

“

National and international meetings are needed to hold dialogue with damaged patients (and their support groups) concerning the unnecessary problems facing iatrogenic patients—the most immediate being that of arranging genuine remedial specialist care. The present culture of ‘denial and cover-up’ needs to be changed to one of ‘openness and honesty’, in which health professionals are able to be truthful with their damaged patients.

Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Number of members: Countries of members: Number of full-time employees: -. Number of volunteers: Affiliations: International Alliance of Patients Organisations (IAPO).

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LEARNING DISABILITY / EQUITY

Inclusion Europe http://www.inclusion-europe.org Secretary General: Ivo Vykydal

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

T: 0032-2-502-28-15 F: 0032-2-502-80-10 Email: secretariat@inclusion-europe.org

A 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 nondiscrimination.

“

Inclusion Europe shapes European disability policy according to the needs and wishes of people with an intellectual disability (and their families).

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: European Commission. Number of members: 65 member organisations from 35 European countries. Countries of members: Albania, Austria, Belgium, Bosnia-Herzegovina, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Macedonia, Malta, Moldova, Netherlands, Norway, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK. Number of full-time employees: 8. Number of volunteers: 2. Affiliations: European Disability Forum (EDF); Platform of European Social NGOs (Social Platform).

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OLDER PEOPLE / DISABILITY

Information Society Open to ImpairmentS (E-ISOTIS) http://www.e-isotis.org President: Zoe Apostolopoulou

61 Aiantos and Athinas 34 Athens 131 22 Greece

T: 0030-210-26-93-760 F: 0030-210-26-93-775 Email: info@e-isotis.org

Works with people with a disability and with older people (and their families), as well as with individuals and companies in information communication technology (ICT). Aims to ensure that older people and people with a disability have access to, and training in, ICT.

Geographic remit: Mainly Europe.

“

e-ISOTIS believes that all citizens have the right to use the benefits offered by the new opportunities of the information society. We consider that people with a disability and older people are the best experts to advise on the policies, products, and services that have an impact on them. e-ISOTIS takes actions to promote their involvement.

Annual funding / income (most recent): €180,000. Pharmaceutical funding: Non-pharma funding: European Commission; sales of own publications. Number of members: 15 member associations from 12 European countries. Countries of members: Belgium, Bulgaria, Croatia, Czech Republic, Estonia, Greece, Hungary, Italy, Lithuania, Netherlands, Portugal, Romania. Number of full-time employees: 12. Number of volunteers: More than 40. Affiliations: -

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GENERAL HEALTHCARE /

International Alliance of Patients’ Organizations (IAPO) http://www.patientsorganizations.org Chief Executive Officer: Joanna Groves

703 The Chandlery 50 Westminster Bridge Road London SE1 7QY UK

T: 0044-(0)-20-7721-7508 F: 0044-(0)-20-7721-7596 Email: info@patientsorganizations.org

Brings a patient voice to international healthcare debates, and provides training and support to build the capacity of patients’ organisations around the world. Has European members, and is involved in European healthcare issues.

“

During 2009-2011, IAPO will be representing the needs and views of patients and patients’ organisations through its membership, to promote and help implement patient-centred healthcare worldwide. In addition, IAPO will be building the capacity of its member organisations to enable them to become more effective patient advocates.

Geographic remit: Global (including Europe). Annual funding / income (most recent): US$927,000 [approximately €648,000] (2008). Pharmaceutical funding: 2008 gold or silver donors each giving either US$50,000 or US$25,000 [approximately €34,000 or €17,000 respectively] were: Amgen; AstraZeneca; Eli Lilly; GSK; International Federation of Pharmaceutical Manufacturers and Associations (IFPMA); Johnson & Johnson; Merck & Co; Novartis; Sanofi-Aventis. Non-pharma funding: GE Healthcare; Medtronic Foundation. Membership fees (US$13,000 [approximately €9,000] in 2008); publication sales. Number of members: 76 full and associate member organisations from 23 European countries, plus 6 panEuropean organisations. Countries of members: Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, Germany, Greece, Hungary, Ireland, Italy, Lithuania, Macedonia, Netherlands, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, UK. Number of full-time employees: 4, plus 2 part time. Number of volunteers: 1. Affiliations: Health First Europe (HFE, in official relations with the WHO and official partnerships with the International Council of Nurses, International Pharmaceutical Federation and World Medical Association . EUROPEAN PATIENT GROUP DIRECTORY, 2009-2010 © BURSON-MARSTELLER / PATIENTVIEW

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CANCER /

International Brain Tumour Alliance (IBTA) http://www.theibta.org Co-Director: Kathy Oliver

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. Project-manages an annual Awareness Week and a ‘Walk Around the World for Brain Tumours’, in which people are encouraged to undertake sponsored or unsponsored walks to raise awareness about brain tumours (the IBTA does not receive any funds raised by these activities).

“

T: 0044-(0)-1737-813-872 F: 0044-(0)-1737-812-712 Email: kathy@theibta.org

“

PO Box 244 Tadworth Surrey KT20 5WQ UK

European activities centred on rare cancers are gaining momentum, and the IBTA has been involved at an organisational level in a number of these.

Geographic remit: Europe (and international). Annual funding / income (most recent): Pharmaceutical funding: In 2009: Antisense Pharma; Archimedes Pharma; Ark Therapeutics; Astra Zeneca; Eli Lilly; Merck Serono; NovoCure; Schering-Plough. Non-pharma funding: Charitable organisations and individuals with an interest in improving the situation for brain tumour patients. Number of members: No formal membership structure. Main projects supported by relevant patient/caregiver support groups, professional societies, commercial and other organisations from many countries. Countries of members: Number of full-time employees: None. Number of volunteers: The IBTA’s day-to-day work and projects are carried out by volunteers and a steering committee. The number of volunteers vary at any given time. Affiliations: European Federation of Neurological Associations (EFNA).

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NEUROLOGICAL CONDITIONS /

International Bureau for Epilepsy-Europe (IBE-Europe) http://www.ibe-epilepsy.org/regions/?c=Europe Secretary: Aisling Farrell

IBE International headquarters 11 Priory Hall Stillorgan Dublin 18 Ireland

T: 00353-1-210-88-50 F: 00353-1-210-84-50 Email: ibedublin@eircom.net

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.

“

We are aiming to bring epilepsy to light, upgrading care, and working towards a better quality of life for less-privileged Europeans with epilepsy. There are countries in Europe that have not yet had the opportunity to deal in everyday life with epilepsy issues—let alone to create an IBE member.

Geographic remit: Europe. Annual funding / income (most recent): For the parent organisation, IBE: US$2.3m [approximately €1.6m] (2007). Pharmaceutical funding: In 2008: UCB Pharma. Non-pharma funding: Donations from commerce and industry; grants; international congresses; membership dues. Number of members: 51 full and associate member organisations (mainly patient groups) from 30 European countries. Countries of members: Austria, Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Lithuania, Malta, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK. Number of full-time employees: Number of volunteers: Affiliations: EUROPEAN PATIENT GROUP DIRECTORY, 2009-2010 © BURSON-MARSTELLER / PATIENTVIEW

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DIABETES /

International Diabetes Federation-European Region (IDF-Europe) http://www.idf.org/idf-european-region Regional Manager: Lex Herrebrugh

IDF-Europe Chaussée de la Hulpe 166 1170 Brussels Belgium

T: 0032-2-537-18-89 F: 0032-2-537-19-81 Email: info@idf-europe.org

One of seven regional groupings in the International Diabetes Federation, the only global advocate for people with diabetes and their healthcare providers.

“

DF-Europe’s primary EU policy objective remains to drive the development of an EU strategy for diabetes—specifically, an EU Council Recommendation on Diabetes Prevention, Early Diagnosis and Control.

Geographic remit: Europe (and global). Annual funding / income (most recent): €919,000 in 2007, according to the ETI Register. Pharmaceutical funding: In 2008: AstraZeneca; Bayer; Bioton; Eli Lilly; Merck Sharp & Dohme; Novartis; Novo Nordisk; Pfizer Europe; Sanofi-Aventis; Servier. GSK points out that its 2008 donation of €25,000 represented 3% of the organisation’s revenue that year. Non-pharma funding: LifeScan; Roche Diagnostics. IDF Global (€25,000 annually). Member associations (€312,000 in 2007, according to the ETI Register). IDF-Europe states that it receives no financial support from governments or the European Commission. Number of members: 54 member organisations from 35 European countries. Countries of members: Albania, Austria, Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Macedonia, Malta, Moldova, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK. Number of full-time employees: 2 in the European office, 1 stationed in Bucharest. Number of volunteers: IDF-Europe Board. Member associations have tens of thousands of volunteers. Affiliations: European Patients’ Forum (EPF); European Public Health Alliance (EPHA); Health First Europe (HFE). EUROPEAN PATIENT GROUP DIRECTORY, 2009-2010 © BURSON-MARSTELLER / PATIENTVIEW

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BONE /

International Osteoporosis Foundation (IOF) http://www.iofbonehealth.org Chief Executive Officer: Patrice McKenney

9 rue Juste-Olivier 1260 Nyon Switzerland

T: 0041-22-994-01-00 F: 0041-22-994-01-01 Email: info@iofbonehealth.org

A global alliance of patient, medical, and research societies, scientists, healthcare professionals, and corporate partners across many fields. Works to increase awareness and understanding of osteoporosis, and motivate people to take action to prevent, diagnose, and treat osteoporosis. Supports national osteoporosis societies.

“

2009 is a year in which IOF has grown in strength, increasing its effectiveness on all fronts in the drive towards the IOF vision of a world without osteoporotic fractures.

Geographic remit: Europe (and worldwide). Annual funding / income (most recent): CHF5.4m [approximately €3.5m] (2008). Pharmaceutical funding: In 2009: Alliance for Better Bone Health (ABBH) [comprising Procter & Gamble Pharmaceuticals and Sanofi-Aventis]; Amgen; Eli Lilly and Co; GSK; MSD; Novartis; Roche; Schering; Servier; Wyeth. Non-pharma funding: In 2009: Banque Piguet & Cie; Danone; Fonterra Brands; Friesland Foods; Hologic; Kyphon; Medtronic; TetraPak; Yoplait. Congress and membership fees; foundation grant; training courses. Number of members: 100 member organisations (many of which are patient groups) from 35 European countries. Countries of members: Austria, Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Macedonia, Malta, Moldova, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK. Number of full-time employees: 12. Number of volunteers: None. Affiliations: -

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AUTO-IMMUNE / IMMUNE DISEASES /

International Patient Organisation for Primary Immunodeficiencies (IPOPI) http://www.ipopi.org Executive Director: David Watters Firside Main Road DownDerry Cornwall, PL11 3LE UK

T: 0044-(0)-1503-250-521 F: 0044-(0)1503-250-668 Email: info@ipopi.org

Advocates to convince governments of the importance of early diagnosis and effective treatment for people with primary immunodeficiencies (a set of more than 100 genetic disorders that make individuals susceptible to infections). Aims to improve the quality of life of people with a primary immunodeficiency.

“

Our website is one of our most effective outreach tools, and is currently achieving over 170,000 hits a month-well worth a visit.

Geographic remit: Global. Annual funding / income (most recent): £171,000 [approximately €194,000]. Pharmaceutical funding: Baxter; CLS Behring; Grifols; Octapharma; Talecris. Non-pharma funding: National member organisations. Number of members: Member organisations from 19 European countries. Countries of members: Austria, Belgium, Denmark, Estonia, Finland, France, Germany, Hungary, Iceland, Ireland, Italy, Netherlands, Norway, Poland, Serbia-Montenegro, Spain, Sweden, Switzerland, UK. Number of full-time employees: None. Executive director part-time, with part-time secretarial and accounting support. Number of volunteers: Includes a 10-person Executive Committee. Affiliations: European Organisation for Rare Diseases (EURORDIS); European Patients’ Forum (EPF).

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REPRODUCTIVE / SEXUAL HEALTH / FAMILIES

International Planned Parenthood Federation European Network (IPPF EN) http://www.ippfen.org/en Regional Director: Vicky Claeys IPPF European Network Rue Royale 146 1000 Brussels Belgium

T: 0032-2-250-09-50 F: 0032-2-250-09-69 Email: info@ippfen.org

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.

“

We are increasingly and successfully building up our networks and expanding our relationships with a range of organisations in the areas of sexual and reproductive health, HIV/AIDS, etc. We have moved ahead in our European advocacy work, and our member associations have been successfully implementing a range of critical projects.

Geographic remit: Mainly Europe. Annual funding / income (most recent): US$5.1m [approximately €3.5m] (2008). Pharmaceutical funding: Non-pharma funding: In 2008: US$3m [approximately €2m] from parent body, the IPPF. US$2.1m [approximately €1.4m] from other sources: Bill and Melinda Gates Foundation; European Commission; Summit Foundation; UK Department for International Development (DFID). Number of members: 33 member organisations from 32 European countries. Countries of members: Albania, Austria, Belgium, Bosnia-Herzegovina, Bulgaria, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Latvia, Lithuania, Luxembourg, Macedonia, Moldova, Netherlands, Norway, Poland, Portugal, Romania, Slovakia, Spain, Sweden, Switzerland, Turkey, UK. Number of full-time employees: 22. Number of volunteers: Affiliations: European Public Health Alliance (EPHA); European NGO Confederation for Relief and Development (CONCORD); Platform of European Social NGOs (Social Platform). EUROPEAN PATIENT GROUP DIRECTORY, 2009-2010 © BURSON-MARSTELLER / PATIENTVIEW

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GENETIC / RARE DISEASES /

International Pompe Association (IPA) http://worldpompe.org IPA Secretary: Ria Broekgaarden

IPA Secretariat c/o Vereniging Spierziekten Nederland Lt. Gen. v. Heutszlaan 6 3743 JN Baarn Netherlands

T: 0031-35-548-0461 F: Email: ria.broekgaarden@vsn.nl

A federation of Pompe disease patient groups. Seeks to coordinate activities, and share experience and knowledge. Campaigns for early diagnosis, and effective, affordable, and safe therapies. Provide information and support to people with Pompe disease, and works closely with industry to monitor developments, and represent the views and needs of patients early in the drug-development process.

“

The IPA supports and encourages national IPA organisations to obtain approval and reimbursement for therapies from government bodies and healthcare providers, and encourages other organisations to establish a mechanism for all people with Pompe disease to gain access to therapies, irrespective of their personal financial status.

Geographic remit: Global, with a strong European presence. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Number of members: 11 federate organisations from 11 European countries (plus 6 individual contacts in a further 6 European countries). Countries of members: Austria, Germany, Greece, Italy, Netherlands, Norway, Poland, Spain, Switzerland, Turkey, UK. Number of full-time employees: The IPA notes that it hopes to find the funds to sustain a full-time post. Number of volunteers: A largely volunteer-based organisation. Affiliations: -

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PUBLIC HEALTH /

International Union for Health Promotion and Education/ European Region (IUHPE/EURO) http://www.iuhpe.org/index.html?page=603&lang=en Vice President for European region: awaiting appointment 42 Blvd. de la Libération 93203 St. Denis Cedex France

T: 0033-1-48-13-71-20 F: 0033-1-48-09-17-67 Email: iuhpe@iuhpe.org

The 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 related to health promotion, and lobbies policy- and decision-makers.

“

Broadening and developing the advocacy work in the European region is one of the main goals of IUHPE/EURO. The focus is on putting in place a ‘melting pot’ of academic research, policy making and practical work on health promotion.

Geographic remit: Europe. Annual funding / income (most recent): €35,000 (2007). Parent body, IUHPE: €1.1m (2007). Pharmaceutical funding: None. Non-pharma funding: The parent body (IUHPE); membership fees. Parent body’s main donor: French Health Directorate. Number of members: 505 trustee, institutional, and individual members from 32 European countries. Countries of members: Austria, Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Kosovo, Latvia, Macedonia, Malta, Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK. Number of full-time employees: 7 at IUHPE headquarters. None for the European region of IUHPE. Number of volunteers: None. Affiliations: -

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CANCER /

Leukämie-Online http://www.leukaemie-online.de Chair: Jan Geissler

Am Rothenanger 1b 85521 Riemerling Germany

T: 0049-89-6283-6807 F: 0049-89-6283-6808 Email: info@leukaemie-online.de

One of the most frequented online communities for German -speaking patients with leukemia. Provides news and knowledge about progress in research and leukemia therapy, as well as a discussion forum. Every member of the community can ask questions, submit articles, and

“

Leukämie-Online was set up, and is run, solely by patients and their relatives.

Geographic remit: German-speaking parts of Europe (Austria, Germany, Luxembourg, Switzerland). Annual funding / income (most recent): €20,000. Pharmaceutical funding: Bristol Myers Squibb; Novartis. Non-pharma funding: Donations from the public. Number of members: Over 1,600. Countries of members: Austria, Germany, Luxembourg, Switzerland. Number of full-time employees: None. Number of volunteers: 3. Affiliations: CML Advocates Network; Deutsche Leukämie- und Lymphom-Hilfe (DLH); European Cancer Patient Coalition (ECPC).

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AUTO IMMUNE / IMMUNE DISEASES /

Lupus Europe http://www.lupus-europe.org Secretary: Nele Caeyers

8 Legge Lane Coseley West Midlands WV14 8RQ UK

T: 0032-498-32-03-05 F: Email: nele@rheumanet.be

An umbrella group for national lupus 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. Intends to encourage and support the health and social systems of member countries, to allow people with lupus to live independent lives and be recognised as equal members of society.

“

The Lupus Europe vision is that all people with lupus throughout Europe have guaranteed access to competent health carers and high-quality treatment, and are ensured all the support required to live a comfortable life.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Lupus Europe notes that it is only project funded.

Non-pharma funding: Activities around Europe (such as London Marathon); gifts; member fees. Number of members: 22 lupus member groups from 19 European countries. Countries of members: Belgium, Cyprus, Denmark, Finland, France, Germany, Hungary, Iceland, Ireland, Italy, Malta, Netherlands, Norway, Portugal, Slovenia, Spain, Sweden, Switzerland, UK. Number of full-time employees: Number of volunteers: All individuals involved with Lupus Europe are volunteers. Affiliations: European Patients’ Forum (EPF).

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CANCER /

Lymphoma Coalition http://www.lymphomacoalition.org Secretariat: Trish Carter

c/o Lymphoma Association PO Box 386 Aylesbury Buckinghamshire, HP20 2GA UK

T: 0044-1296-619-423 F: Email: info@lymphomacoalition.org

A global network of not-for-profit lymphoma patient organisations, with the vision to free the world of lymphoma. Raises awareness to improve understanding of lymphomas and to ensure bestpractice management of lymphomas.

“

Our vision is to rid the world of lymphomas by increasing awareness, understanding and management of lymphoma.

Geographic remit: Europe (and the rest of the world). Annual funding / income (most recent): £80,000 [approximately €91,000]. Pharmaceutical funding: Eli Lilly; GSK; F. Hoffmann la Roche; Janssen-Cilag. Non-pharma funding: Currently none. Number of members: 41 members from 19 European countries. Countries of members: Bulgaria, Croatia, Czech Republic, Denmark, France, Germany, Ireland, Italy, Latvia, Lithuania, Netherlands, Poland, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK. Number of full-time employees: 1 part time. Number of volunteers: 7 Board members. Affiliations: -

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MENTAL HEALTH /

Mental Disability Advocacy Center (MDAC) http://www.mdac.info Executive Director: Oliver Lewis

Rákóczi út 27/B 1088 Budapest Hungary

T: 0036-1-413-27-30 F: 0036-1-413-27-39 Email: mdac@mdac.info

Advances the human rights of children and adults with actual or perceived intellectual or psycho-social (mental health) disabilities. Uses a combination of law and advocacy to promote equality and social integration. Priority human-rights areas are legal capacity and guardianship, inhuman and degrading treatment and punishment, the right to live in the community, and inspections of places of detention.

“

The MDAC’s vision is for a world in which people respect each other’s autonomy and dignity, and where emotional, mental, and learning differences are valued.

Geographic remit: Europe (and Central Asia). Annual funding / income (most recent): €646,000 (2008). Pharmaceutical funding: Non-pharma funding: 2009 donors: Open Society Institute (OSI); EEA grants from the Norwegian government; European Commission; Sigrid Rausing Trust; Swedish Helsinki Committee; Trust for Civil Society in Central and Eastern Europe; UK Foreign and Commonwealth Office. Number of members: No member organisations. Countries of members: Number of full-time employees: 9. Number of volunteers: 8. Affiliations: -

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MENTAL HEALTH /

Mental Health Europe – Santé Mentale Europe (MHE-SME) http://www.mhe-sme.org Director: Mary Van Dievel

Boulevard Clovis 7 1000 Brussels Belgium

T: 0032-2-280-04-68 F: 0032-2-280-16-04 Email: info@mhe-sme.org

A non-governmental organisation committed to the promotion of positive mental health, 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).

Geographic remit: Europe.

“

No health without mental health. This message is reaching more and more policymakers—witness the recent European Commission launch of the European Pact for Mental Health and Well-being, and the new policy initiatives on mental-health promotion and prevention in an increasing number of EU Member States.

Annual funding / income (most recent): Pharmaceutical funding: MHE states that it does not accept funding from pharmaceutical companies. Non-pharma funding: In 2008: Co-funding from partners (2%); donations (3%); European Commission (87%); membership fees (8%). Number of members: 68 member organisations from 30 European countries. Countries of members: Austria, Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Malta, Netherlands, Norway, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, Switzerland, UK. Number of full-time employees: 6. Number of volunteers: 1. Affiliations: European Disability Forum (EDF); European Patients’ Forum (EPF); European Public Health Alliance (EPHA); Platform of European Social NGOs (Social Platform).

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CANCER /

Myeloma Euronet (ME) http://www.myeloma-euronet.org Executive Director: Robert Schaefer

Robert Schaefer Myeloma Euronet Secretariat Brunnenstrasse 178/179 10119 Berlin Germany

T: 0049-(0)30-28-87-97-55 F: 0049-(0)30-28-87-97-66 Email: info@myeloma-euronet.org

An international non-profit organisation of multiple myeloma patient groups, and a European initiative dedicated to raising awareness of this increasingly-common form of bone marrow cancer. Provides information on diagnosis, treatment and care of people living with multiple myeloma, and supports member organisations in their missions. Advocates (independently, and in collaboration with organisations with similar objectives) on behalf of people affected by multiple myeloma.

Geographic remit: Europe.

“

The goals of Myeloma Euronet are to advocate the cause of myeloma among EU healthcare policy-makers, and share best practice in shaping policies at European level. We raise European awareness of multiple myeloma among stakeholders and the public, provide information on diagnosis, treatment, care and support for myeloma patients and their families, and build partnerships among members of Myeloma Euronet. We also encourage the growth of new multiple myeloma patient groups throughout Europe (especially in cities and countries where they are not now found).

Annual funding / income (most recent): €214,000. Pharmaceutical funding: Celgene GmbH; Celgene International Sàrl; Novartis Pharma AG; Ortho Biotech [a division of Janssen-Cilag, the founding sponsor]. Non-pharma funding: Private donations; speaker honoraria; reimbursements. Number of members: 40 (33 organisational, 7 individual) from 19 European countries. Countries of members: Austria, Croatia, Czech Republic, Cyprus, France, Germany, Latvia, Poland, Portugal, Romania, Russia, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK. Number of full-time employees: None. Number of volunteers: 15-20. Affiliations: European Cancer Patient Coalition (ECPC); European CanCer Organisation (ECCO); European Organisation for Rare Diseases (EURORDIS).

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MENTAL HEALTH /

National Suicide Bereavement Support Network (NSBSN) http://www.nsbsn.org/europeandirectory.htm Chairperson: Theresa Millea

P.O. Box 1 Youghal County Cork Ireland

T: 00353-(0)24-95-561 F: 00353-(0)87-987-7619 Email: info@nsbsn.org

A 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.

“

An increase in the number of support groups is a very positive development—showing, to some degree, that the awful stigma previously associated with suicide is beginning to lift.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Number of members: About 192 support groups and associated facilities from 16 European countries. Countries of members: Austria, Belgium, Denmark, Estonia, Finland, France, Germany, Ireland, Lithuania, Netherlands, Norway, Slovenia, Sweden, Switzerland, Turkey, UK. Number of full-time employees: Number of volunteers: Numerous volunteers work for the Network and for featured support groups. Affiliations:-

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MENTAL HEALTH /

Open Society Mental Health Initiative (MHI) http://www.osmhi.org Director: Judith Klein

Open Society Institute Oktober 6. u. 12 1051 Budapest Hungary

T: 0036-1-327-3100 F: 0036-1-327-3101 Email: mhi@osi.hu

Aims to ensure that people with a mental health problem and/or an intellectual disability are able to live in the community and participate in society. Part of the Open Society Institute (OSI), George Soros’ grant-making foundation. Provides financial and technical support throughout eastern Europe for the development of community-based alternatives to institutionalisation.

“

The MHI’s activities are focused on ending the institutionalisation of people with mental disabilities by advocating for the closure of institutions, and for the development of community-based alternatives in the region.

Geographic remit: Central and eastern Europe. Annual funding / income (most recent): Pharmaceutical funding: None. Non-pharma funding: Open Society Institute (OSI). Number of members: No members, but 4 partner groups from 4 eastern European countries. Countries of members: Bulgaria, Croatia, Romania, Serbia. Number of full-time employees: Number of volunteers: Affiliations: Open Society Institute (OSI).

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GENETIC / RARE DISEASES /

ORPHANET http://www.orpha.net Director: Prof Dr Ségolène Aymé

INSERM SC11 102 rue Didot 75014 Paris France

T: 0033-(0)1-56-53-81-37 F: 0033-(0)1-56-53-81-38 Email: orphanet@inserm.fr

A free-of-charge, searchable-by-disease-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. Although not strictly a patient group, Orphanet has been included in this directory because of its value to patients.

“

ORPHANET offers services for patients and their families, health professionals and researchers, patient support groups, and industry. ORPHANET aims to improve the diagnosis, management, and treatment of rare diseases.

Geographic remit: Europe. Annual funding / income (most recent): €2m (2008).

Pharmaceutical funding: Les Entreprises du Médicament (LEEM). Non-pharma funding: Association Française contre les Myopathies (AFM); European Commission; Foundation ‘Groupama pour la santé’; Institut National de la Santé et de la Recherche Médicale (INSERM); Ministère de la Santé français. Number of members: No members; run by a consortium of partners (one from 32 European countries). Countries of members: 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. Number of full-time employees: 25 in France and 10 full-time equivalents in other European countries. Number of volunteers: Over 500 scientists write for Orphanet without compensation. Affiliations: None.

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GENETIC / RARE DISEASES /

Osteogenesis Imperfecta Federation Europe (OIFE) http://www.oife.org President: Ute Wallentin

Sturzstrasse 17 96049 Bamberg Germany

T: 0049-951-60-3316 F: Email: office@oife.org

Represents people with osteogenesis imperfecta (OI, brittle bone disease), supports OI families and OI groups, and networks between OI patients and professionals.

“

OIFE aims to support all beneficial developments for people with OI and their families. We try to improve the lives of people with this disorder, advocate for diagnosis and better treatment, and back research into the condition.

Geographic remit: Europe (plus international associate members). Annual funding / income (most recent): €8,000. Pharmaceutical funding: Non-pharma funding: Annual membership fees. Number of members: 23 member organisations from 13 European countries. Countries of members: Belgium, Croatia, Denmark, Finland, France, Germany, Italy, Netherlands, Norway, Portugal, Spain, Sweden, Switzerland. Number of full-time employees: None. Number of volunteers: 5. Affiliations: European Organisation for Rare Diseases (EURORDIS).

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PUBLIC HEALTH /

Pesticide Action Network Europe PAN EUROPE http://www.pan-europe.info Coordinator: Elliott Cannell

Development House 56-64 Leonard Street London EC2A 4LT UK

T: 0044-(0)20-7065-0920 F: 0044-(0)20-7065-0907 Email: elliott@pan-europe.info

A network of grassroots consumer, public health, and environmental organisations working to replace the use of hazardous pesticides with ecologically-sound alternatives. Serves as the focal point for NGO advocacy and public participation in EU pesticide policy, and functions closely with representatives of the European Commission, Council and Parliament. Orchestrates independent food-testing initiatives to inform consumers.

“

Reduction in the use of pesticides (including biocides) is a prerequisite for improvements in the health of workers and the public alike. We want to see dependency on chemical pesticides eliminated. Our research has shown widespread pesticide contamination in grapes sold across five EU countries, for instance.

Geographic remit: Europe. Annual funding / income (most recent): Part-share of a £300,000 grant [approximately €341,000] (2007). Pharmaceutical funding: Non-pharma funding: Project-funding grants from the Sigrid Rausing Trust via PAN UK. Number of members: 29 member organisations from 16 European countries. Countries of members: Austria, Belgium, Bulgaria, Denmark, France, Germany, Hungary, Ireland, Italy, Macedonia, Netherlands, Poland, Slovakia, Slovenia, Sweden, UK. Number of full-time employees: Number of volunteers: Affiliations: -

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INFECTIOUS /

Polio Initiative Europa (PIE) http://www.polio-initiative-europa.de Chairperson: Dr Claus-Peter Kos

Bad Stebener Strasse 8 95138 Bad Steben Thierbach Germany

T: 0049-(0)9288-363 F: 0049-(0)9288-925-500 Email: dr-kos@web.de

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.

“

The PIE supports scientific work in the field of poliomyelitis, advocates for measures to prevent the disease, and publicises post-polio projects and networks.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Number of members: Countries of members: Number of full-time employees: Number of volunteers: Affiliations:-

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RESPIRATORY /

Pulmonary Hypertension Association Europe PHA EUROPE http://www.phaeurope.org Vice-President and Treasurer: Gerry Fischer

Wilhelmstrasse 19 1120 Vienna Austria

T: 0043-1-402-37-25 F: 0043-1-409-35-28 Email: info@phaeurope.org

An umbrella organisation of national pulmonary hypertension (PH) associations. Aims to achieve the best-possible standards of care for Europe’s people with PH, ensure the availability of drug therapies associated with the treatment of PH, promote social support for patients and their families, and see that people with PH gain a better quality of life. Provides lists of specialised treatment clinics in each member country.

Geographic remit: Europe.

“

The experience of well-established federations is precious, and enables everybody to focus on more ambitious goals. PHA Europe intends to act as a catalyst between the medical world, pharmaceutical companies, European institutions, and national and international organisations and patients.

Annual funding / income (most recent): Pharmaceutical funding: PHA Europe notes that GSK is its main sponsor. GSK points out that its 2008 donation of €10,000 represented 60% of the organisation’s revenue that year. Non-pharma funding: Number of members: 11 member associations from 9 European countries. Countries of members: Austria, Belgium, Czech Republic, France, Germany, Italy, Spain, Switzerland, Turkey. Number of full-time employees: -. Number of volunteers: 6-person Executive Committee. Affiliations: PH International.

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GENETIC / RARE DISEASES / DISABILITY

Retina International http://www.retina-international.org President: Christina Fasser

Ausstellungstrasse 36 8005 Zürich Switzerland

T: 0041-44-444-10-77 F: 0041-44-444-10-70 Email: christina.fasser@retina-international.org

A voluntary, charitable, umbrella association of national societies that seek a cure for retina pigmentosa, macular degeneration, Usher syndrome, and allied retinal dystrophies. Provides information, promotes public awareness, and encourages the foundation of new member societies.

“

Mobility and participation in society are basic rights of European citizenship. These rights are, however, often denied to people with visual impairment.

Geographic remit: International. Annual funding / income (most recent): CHF 82,000 [approximately €54,000]. Pharmaceutical funding: None. Non-pharma funding: Donations by association members; private donations. Number of members: 32 from 17 European countries. Countries of members: Denmark, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Netherlands, Norway, Poland, Portugal, Spain, Sweden, Switzerland, UK. Number of full-time employees: 0.3. Number of volunteers: 20. Affiliations: 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).

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GENETIC / RARE DISEASES /

Rett Syndrome Europe (RSE) http://www.rettsyndrome.eu Secretary: Eva Tabai

Alkotmány u. 8 1221 Budapest Hungary

T: F: Email: postmaster@rettsyndrome.eu

Maintains links with other Rett syndrome organisations, runs an annual meeting and holds European conferences (hosted in a member country). Disseminates up-to -date information about the disorder and about support for families and carers.

Geographic remit: Europe.

“

The RSE has organised European conferences in Croatia, the Czech Republic, Poland, and Slovakia. New national associations have been started and supported. Information on Rett syndrome has been shared, and public awareness has grown.

Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Each member country’s annual contribution of €300 (waived when a member is not able to make the contribution). Number of members: 21 member organisations from 20 European countries (plus individual members from 11 more European countries). Countries of members: Austria, Belgium, Croatia, Czech Republic, Denmark, France, Germany, Hungary, Ireland, Italy, Netherlands, Norway, Poland, Portugal, Serbia, Spain, Sweden, Switzerland, Turkey, UK. Number of full-time employees: None. Number of volunteers: About 10. Affiliations: -

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PALLIATIVE /

Right to Die Europe (RTD-E) http://www.rtde.eu No named contact person.

RtD-Europe Secretariat Postbus 75331 1070 AH Amsterdam Netherlands

T: 0031-(0)20-620-0690 F: Email: secretariat@rtde.eu

An umbrella organisation of European societies dedicated to securing or protecting the rights of individuals to self-determination at the end of their lives. Promotes co-operation and liaison among member societies.

“

Together, we serve those working for individual rights to self-determination at life's end.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: None. Non-pharma funding: Member societies. Number of members: 18 member societies from 12 European countries. Countries of members: Belgium, Denmark, France, Germany, Italy, Luxembourg, Netherlands, Norway, Spain, Sweden, Switzerland, UK. Number of full-time employees: None. Number of volunteers: Only volunteers work for RtD-E. Affiliations: World Federation of Right to Die Societies.

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CANCER /

Sarcoma Patients EuroNet Association (SPAEN) http://www.sarcoma-patients.eu Contact Person: Markus Wartenberg

SPAEN Administrative Office Usa-Strasse 1 61231 Bad Nauheim Germany

T: 0049-6032-9492-438 F: 0049-6032-9492-885 Email: spaen@lebenshauspost.org / info@sarcoma-patients.eu

A new European network of sarcoma patient advocacy groups. SPAEN raises awareness of sarcomas (including desmoids and GIST) among the public and healthcare stakeholders, works to optimise a panEuropean 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.

“

Acting in partnership with clinical experts, scientific researchers, and other stakeholders, SPAEN is working to improve the treatment and care in Europe of people with sarcoma by improving information and support, and by increasing the visibility of sarcoma among policymakers and the public. A better future for patients with a rare cancer.

Geographic remit: Europe (and worldwide). Annual funding / income (most recent): None in 2009 (the Association was founded in April 2009). Pharmaceutical funding: None. SPAEN notes that it is in negotiations with potential funders (including pharmaceutical companies). Non-pharma funding: Funded by four founding members: AFPG Ensemble contre le GIST; Das Lebenshaus ; Sarcoma UK; and SOS Desmoid, plus membership fees. Number of members: 11 member organisations from 7 European countries. Countries of members: France, Germany, Italy, Poland, Romania, Switzerland, UK. Number of full-time employees: One half-time employee. Number of volunteers: All other people working for SPAEN are volunteers. Affiliations: European Cancer Patient Coalition (ECPC).

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GENETIC / RARE DISEASES / NEUROLOGICAL CONDITIONS

SMA Europe http://www.sma-europe.net President: Domenico Marchetti

T: F: Email: sma-europe@afm.genethon.fr

SMA Europe notes that it does not yet have a staffed office

An alliance of seven of the leading European spinal muscular atrophy (SMA) patient groups and research charities dedicated to finding a cure for SMA. Established in 2006, it aims to act as an information-sharing and grant-giving platform for the European SMA community.

“

SMA Europe has successfully combined resources from its member organisations (resulting in research grants totalling nearly €800,000 in 2009) to fund the best researchers on SMA. A commitment for a similar initiative has been made for 2010, and it is hoped to make this an annual event. The shortterm aim is to launch human clinical trials for SMA.

Geographic remit: Europe (and the USA). Annual funding / income (most recent): Pharmaceutical funding: None. Non-pharma funding: Member organisations. Number of members: 7 member associations from 6 European countries. Countries of members: France, Germany, Italy, Netherlands, Spain, UK. Number of full-time employees: None. Number of volunteers: None. Affiliations: European Organisation for Rare Diseases (EURORDIS).

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PUBLIC HEALTH /

Smokefree Partnership (SFP) http://www.smokefreepartnership.eu Director: Florence Berteletti-Kemp

c/o European Respiratory Society 49-51 rue de Treves 1040 Brussels Belgium

T: 0032-2-238-53-60 F: 0032-2-238-53-61 Email: smokefree.partnership@ersnet.org

A partnership between four organisations with a mission to see the effective implementation of the Framework Convention on Tobacco Control (FCTC). The SFP works with decision -makers to ensure that tobacco control receives adequate political attention at EU level, and to promote tobacco-control information and policy research at EU and national levels (in collaboration with other EU health organisations).

Geographic remit: Europe.

“

The 2009 reshuffling of the European institutions could slow EU progress in introducing and implementing tobacco-control policies, and lead to a loss of key alliances with decision-makers. The SFP fully intends to turn this challenge into an opportunity.

Annual funding / income (most recent): €350,000 (2008). Pharmaceutical funding: In 2008: GSK, Novartis, and Pfizer each donated €5,000. Non-pharma funding: Funded by members. In 2008: Cancer Research UK (€100,000); European Heart Network (€20,000); European Respiratory Society (€50,000); Institut National du Cancer (€100,000); International Union against Tuberculosis and Lung Disease (€65,000). Number of members: 4 partner organisations (2 of which are NGOs) in 2 European countries. Countries of members: France, UK. Number of full-time employees: 2, plus 2 interns. Number of volunteers: None. Affiliations: 4 partner organisations.

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DISABILITY /

Social Firms Europe (CEFEC) http://www.cefec.org Coordinator: Dr Marianna Georgalis

CEFEC Secretariat Traiber 4 104 38 Athens Greece

T: 0030-210-82-59-797 F: 0030-210-52-45-302 Email: secretariat@cefec.org

Represents small and medium-sized enterprises, NGOs, and other bodies that share the aim of creating employment for people with a disability in socially-oriented businesses. Annual conference brings together users of mental health services, members, mental health professionals and managers.

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People with a disability have the right to a normal workplace in which they can also expect to receive the same rights as any able-bodied person—a normal work contract, and the same salary.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Membership fees.

Number of members: 29 member organisations in 18 European countries. Countries of members: Austria, Belgium, Bulgaria, Cyprus, Czech Republic, Denmark, Finland, Germany, Greece, Italy, Poland, Portugal, Romania, Serbia, Slovenia, Spain, Switzerland, UK. Number of full-time employees: None (1 part time). Number of volunteers: Includes a 13-member Executive Committee. Affiliations: European Disability Forum (EDF).

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CIRCULATORY / HEART DISEASE /

Stroke Alliance for Europe (SAFE) http://www.safestroke.com President: Markus Wagner

SAFE Secretariat c/o Stroke House 240 City Road London, EC1V 2PR UK

T: 0044-(0)207-566-0310 F: 0044-(0)207-490-2686 Email: mail@safestroke.com

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.

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We work towards all patient in Europe with stroke having rights to a continuum of care. From prevention and risk identification, through emergency response to organised stroke units in acute phase, to appropriate rehabilitation and secondary prevention measures by 2015.

Geographic remit: Europe. Annual funding / income (most recent): Pharmaceutical funding: MSD; Sanofi-Aventis. Non-pharma funding: GE Healthcare. Subscriptions from supporting organisations. Number of members: 21 member organisations from 16 European countries. Countries of members: Austria, Belgium, Czech Republic, Denmark, Finland, France, Germany, Hungary, Ireland, Italy, Netherlands, Norway, Slovenia, Spain, Sweden, UK. Number of full-time employees: None. Number of volunteers: 90. Affiliations: European Federation of Neurological Associations (EFNA).

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BLOOD DISORDERS /

Thalassaemia International Federation (TIF) http://www.thalassaemia.org.cy Executive Director: Dr Androulla Eleftheriou

PO Box 28807 2083 Nicosia Cyprus

T: 00357-22-319-129 F: 00357-22-314-552 Email: thalassaemia@cytanet.com.cy

An 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.

Geographic remit: Europe (and worldwide).

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Empowering patients and strengthening their voice has always been, and remains, the core of the Federation’s activities. Since 1989, over 18,000 health professionals, patients and parents from numerous countries have participated in TIF's educational events.

Annual funding / income (most recent): €821,000 (2008). Pharmaceutical funding: In 2008: ApoPharma; Novartis Oncology. Non-pharma funding: In 2008: Bank of Cyprus; Bio-Rad Laboratories; Canè Medical Technology; Cyprus Ministry of Education; Cyprus Ministry of Health; Cyprus Telecommunication Authority; Cyprus Tourist Organisation; Electricity Authority of Cyprus; European Commission; MEDIS Medical Infusion Systems; Resonance Health; United Nations Development Programme (UNDP); World Health Organization (WHO). Membership fees. Number of members: 28 member organisations from 16 European countries. Countries of members: Albania, Belgium, Bulgaria, Cyprus, France, Germany, Greece, Italy, Luxembourg, Malta, Netherlands, Portugal, Romania, Spain, Turkey, UK. Number of full-time employees: 7. Number of volunteers: 18-member Board of Directors. Affiliations: European Organisation for Rare Diseases (EURORDIS); European Patients’ Forum (EPF); European Platform for Patients’ Organizations, Science and Industry (EPPOSI); European Public Health Alliance (EPHA); International Alliance of Patients’ Organizations (IAPO).

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NEUROLOGICAL CONDITIONS /

TREAT-NMD Neuromuscular Network (TREAT-NMD) http://www.treat-nmd.eu Network Manager: Stephen Lynn

TREAT-NMD Coordination Office c/o Institute of Human Genetics International Centre for Life University of Newcastle upon Tyne NE1 3BZ, UK

T: 0044-(0)191-241-8605 F: 0044-(0)191-241-8770 Email: info@treat-nmd.eu

A network for people with neuromuscular diseases, and professionals working in the field. Aims to advance diagnosis and care, and to develop new treatments for the benefit of patients and families, working closely with scientists, healthcare professionals, the pharmaceutical industry, and patient groups. Builds registries of European patients willing to participate in clinical trials.

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TREAT-NMD projects are important tools to accelerate treatment for neuromuscular diseases. We need your support to help make these projects work, and so reach our joint goal. You can actively participate, and tell the physicians and researchers with whom you are familiar about us and our projects.

Geographic remit: Worldwide, with a continuing emphasis on Europe, especially Central and Eastern Europe. Annual funding / income (most recent): €10 million for 5 years (2007-2011). Pharmaceutical funding: TREAT-NMD states that the two partner pharma companies in the Network provide no funding to the Network. Non-pharma funding: Solely funded (as a Network of Excellence) by the European Commission Sixth Framework Programme. Number of members: 20 member patient associations from 12 European countries. Countries of members: Czech Republic, France, Germany, Ireland, Italy, Netherlands, Romania, Slovenia, Spain, Switzerland, Turkey, UK. Number of full-time employees: 8 in the Newcastle office. TREAT-NMD funds some (full- and part-time) staff across the Network. Number of volunteers: All the major experts in TREAT-NMD are not directly supported by TREAT-NMD, but are funded by their home institution—not exactly volunteers, but they do work for the Network without receiving financial compensation. Affiliations: Not directly members of any umbrella group.

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URINARY /

World Federation of Incontinent Patients (WFIP) http://www.wfip.org Secretary: Nancy Muller

Viale Orazio Flacco 24 70124 Bari Italy

T: 0039-(0)80-509-3389 F: 0039-(0)80-561-9181 Email: nafc@wfip.org

A 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-to-date information, guidelines and educational resources. Seeks international cooperation via lobbying and contact with official bodies and relevant patient advocacy groups.

Geographic remit: Mainly Europe.

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The Federation was assembled out of concern that, even in Europe, people with this condition (at least 20 million across the continent) are not receiving attention from government agencies, researchers, elected officials, policymakers or healthcare institutions—especially in terms of cure, prevention, rehabilitation, assistance and work opportunities.

Annual funding / income (most recent): Pharmaceutical funding: Non-pharma funding: Tena. Annual dues from member organisations; special grants. Number of members: 11 European member associations from 9 European countries. Countries of members: Czech Republic, Denmark, France, Italy, Netherlands, Poland, Romania, Sweden, UK. Number of full-time employees: Number of volunteers: Affiliations: -

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