With special thanks to:
PatientView
Luis Nobles
Ria Broekgaarden
All patientorganisations that took part in the survey:
French Friedreich ataxia association (A.FAF)
Associazione Italiana per la Ricerca sulla Distonia (ARD)
Asociación de Enfermos de Crohn y Colitis Ulcerosa (ACCU)
Action for Breast Cancer Foundation
Addison's Disease Self-Help Group
Asociacion Linfoma Mieloma Leucemia (AEAL)
Association Française cystite interstitie (AFCI)
Association Française
des Dysplasies Ectodermiques (AFDE)
AIDS Information and Support Centre
Associazione Italiana Malati fi Cancro parenti e amici (AIMaC)
Associazione Italiana. Ricerca Anemia Fanconi (AIRFA)
Alpha1-Österreich
Association des Malades Souffrant d'Angio-Oedèmes par déficit en C1 inhibiteur (AMSAO)
Angioma Alliance UK
ANMAR ONLUS et ANMAR ONLUS
APD Prostata
Antenatal results and Choices (ARC)
Arthritis Care
Asociacion Española contra la osteoporosis
Asociación Española deParaparesia Espástica Familiar (AEPEF)
Asociacion Española de Transplantados
Aspoendo A. Portuguesa De Endometriose
Association Entraide aux Malades de Myofasciite à Macrophages (ASSO E3M)
Associação Portuguesa Doentes Próstata
Association Belge du Syndrome de Marfan
Association Française contre Myopathie (AFM)
Association Française du syndrome de Marfan
Association François au petit
Association ISIS
Association Italiana Amici Della Scimitarra Onlus
Association of Young People with ME
Association P.A.V.E.L.
Association VHL France
Associazione Patienti Autoimmuni Intenationale, (APAI)
Asthma UK
Astma- en Allergiekoepel vzw
Astma Fonds Longstichting
Astma Fonds Longpatiëntenvereniging
AUTISTIK
Beat
Bechets Syndrome Society
Belgische Vereniging voor Dystoniepatiënten
Beratungsstelle
Bien Vivre Avec Le Qt Long
Belgische Organisatie voor Kinderen en volwassenen met stofwisselingsziekten (BOKS)
British Porphryia Association
BSHV Exostosen e.V.
Bundesverband Prostatakrebs Selbsthilfe
Bundesverband Psychiatrie-Erfahrener e.V
Cancer Society of Finland
Carpa Patient Association
Charitable Foundation Children with SMA
Children's Cancer Foundation
Cittadinanzattiva-CNAMC-
Club 13&Co.
CMT United Kingdom
Coalition of Associations in Health Care
Contactgroep Uveïtis
Croatian Coalition of Associations in Health Care (KUZ)
Cystic Fibrosis Trust
Czech Society of Haemophilia
Dana Farber/Harvard Cancer Centre SPORE
Danish Ankylosing Spondylitis Society
Danish Epilepsy Association
Danish Lung Association
Deutsche Gesellschaft für Muskelkranke
Deutsche Rheuma-Liga Bundesverband
Different Strokes
Associazione Europea della Sindrome di Mc Cure Allbright (Eamas)
Eesti Neeruhaigete Liit
European federation for Haemochromatosis (EFAPH)
Endometrioseforeningen Norge
European Network of (ex-)Users and Survivors of Psychiatry (ENUSP)
Estonian Parkinson Disease Association
Europa Donna Cyprus
EUROPA DONNA-The European Breast cancer organisation
Europa Uomo
European AIDS Treatment Group EATG
european huntington association
European Social Forum of Cyprus (ESFC)
European Tarlov Cyst Alliance
Nationale Vereniging voor Fibromyalgie patiënten Eendrachtig sterk (F.E.S.)
Fibroid Embolisation (FEmISA)
la Fédération Française des Associations et Amicales de malades (FFAAIR)
Fundacion Hispana de Osteoporosis y Enfermeades metabolicas (FHOEMO)
Finnish Diabetes Association
Foreningen af vHL-patienter og pårørende
FSH-Muscular Dystrophy Support Group
Futura
Galactosemie Vereniging Nederland
Gaucher Vereniging Nederland
GFME Glioblastome Association Michèle FNAPSY
Gorlin syndrome group
H.A.E. Belgium
Herpes Viruses Association
Danish heart Foundation HJERTEFORENINGEN
Irish Cancer Society
Irish Heart Foundation
Irish Lupus Support Group
Kawasaki Support Group
Klinefelter Organisation
KRANK und doch AKTKIV
Krebspatienten für Krebspatienten
Leukaemiehilfe RHEIN-MAIN e.V.
Lithuanian arthritis organization
LUPUS FRANCE
Migrensamtokin
MM&WM Patient organisation (CKP)
Selbsthilfegruppe ffür Kinder mit Spina bifida & Hydrocephalus (MMC OÖ)
Morbus-Osler-Selbsthilfe e. V.
Multiple Sclerosis Society
MYELOMA EURONET
NARPD (Paget's Association)
National Aliance of Childhood Cancer Parents Organisations.
National Rheumatoid Arthritis Society
Nationale vereniging Sjogren patiënten
NCRI Consumer Liaison Group
Nederlandse Cystic Fibrosis Stichting
Nederlandse Federatie van Kankerpatiëntenorganisaties, (NFK)
Nederlandse Obesitas vereniging
Nederlandse Rett Syndroom Vereniging
Nephcure International en CNS Nederland
Nederlandse Vereniging van Hemofilie-Patiënten (NVHP)
Patient Advocacy Committee
PDA contact group
Polio-Allianz e.V.
Polish Association of Angioedema Patients' Aid
Polish Diabetes Association
Positive Action
PSYCHEX
Research Advocacy Network
Retina International
ReumaNet vzw
Reumapatiëntenbond
RIMS
Sarcoma UK (also The Sarcoma Trust)
Sarkoidose Selbsthilfegruppe Tirol
Schweizerische Diabetes-Gesellschaft
SENT-Slovenian org. for mental health
Serbia Osteoporosis Society
SHG "Kopfweh" Wien
SIMA, Asociación Sindrome de Marfan
Simba Onlus
SKUC-MAGNUS
Slovak League against Hypertension
SLOVENE CELIAC SOCIETY
Slovenian Lymphoma & Leukaemia patient Association
Stichting PHA Nederland
Stichting Pijn-Hoop
Stichting Rubinstein-Taybi Syndroom (RTS)
Stiftung zur Förderung der KMT Schweiz
STOP AIDS association
Stichting Tubereuze Sclerosis Nederland (STSN)
Association SURRENALES
The Latvian Umbrella Body For Disability Organization (SUSTENTO)
Swedish EDS National Association
Swedish Heart and Lung Transplant Ass.
Thalassaemia International Federation
The British Trust for The Myelin Project
The Children and Youth Rheumatism Association
The CML Support Group
The Daisy Network
The Dystonia Society
The Fragile X Society
The Hepatitis C Trust
The Information Point
The Miscarriage Association
The Multiple Sclerosis Society of Malta
The Pernicious Anaemia Society
ThinkWell
Thyroid UK
Groupe inter-associatif "traitements et recherche thérapeutique (TRT-5)
Tuberöse Sklerose Deutschland e.V.
Unione Nazionale Asmatici (U.N.A)
UK Multiple Sclerosis Society
Valentin association de Pateurs d'anomalies chromosomales
Verein für Galactosämie Schweiz
Von Hippel Lindau (VHL) Family Alliance International
Vanderbilt-Ingram Cancer Center (VICC) Research Advocates
Vlaamse Vereniging voor Bechtarewpatiën
Vereniging voor Mensen met Constitutioneel Eczeem (VMCE)
Vereniging Spierziekten Nederland
International Pompe Association
Werkgroep Hersentumoren vzw
Zagreb Epilepsy Centre
With special thanks to:
PatientView
Luis Nobles
Ria Broekgaarden
All patientorganisations that took part in the survey:
French Friedreich ataxia association (A.FAF)
Associazione Italiana per la Ricerca sulla Distonia (ARD)
Asociación de Enfermos de Crohn y Colitis Ulcerosa (ACCU)
Action for Breast Cancer Foundation
Addison's Disease Self-Help Group
Asociacion Linfoma Mieloma Leucemia (AEAL)
Association Française cystite interstitie (AFCI)
Association Française
des Dysplasies Ectodermiques (AFDE)
AIDS Information and Support Centre
Associazione Italiana Malati fi Cancro parenti e amici (AIMaC)
Associazione Italiana. Ricerca Anemia Fanconi (AIRFA)
Alpha1-Österreich
Association des Malades Souffrant d'Angio-Oedèmes par déficit en C1 inhibiteur (AMSAO)
Angioma Alliance UK
ANMAR ONLUS et ANMAR ONLUS
APD Prostata
Antenatal results and Choices (ARC)
Arthritis Care
Asociacion Española contra la osteoporosis
Asociación Española deParaparesia Espástica Familiar (AEPEF)
Asociacion Española de Transplantados
Aspoendo A. Portuguesa De Endometriose
Association Entraide aux Malades de Myofasciite à Macrophages (ASSO E3M)
Associação Portuguesa Doentes Próstata
Association Belge du Syndrome de Marfan
Association Française contre Myopathie (AFM)
Association Française du syndrome de Marfan
Association François au petit
Association ISIS
Association Italiana Amici Della Scimitarra Onlus
Association of Young People with ME
Association P.A.V.E.L.
Association VHL France
Associazione Patienti Autoimmuni Intenationale, (APAI)
Asthma UK
Astma- en Allergiekoepel vzw
Astma Fonds Longstichting
Astma Fonds Longpatiëntenvereniging
AUTISTIK
Beat
Bechets Syndrome Society
Belgische Vereniging voor Dystoniepatiënten
Beratungsstelle
Bien Vivre Avec Le Qt Long
Belgische Organisatie voor Kinderen en volwassenen met stofwisselingsziekten (BOKS)
British Porphryia Association
BSHV Exostosen e.V.
Bundesverband Prostatakrebs Selbsthilfe
Bundesverband Psychiatrie-Erfahrener e.V
Cancer Society of Finland
Carpa Patient Association
Charitable Foundation Children with SMA
Children's Cancer Foundation
Cittadinanzattiva-CNAMC-
Club 13&Co.
CMT United Kingdom
Coalition of Associations in Health Care
Contactgroep Uveïtis
Croatian Coalition of Associations in Health Care (KUZ)
Cystic Fibrosis Trust
Czech Society of Haemophilia
Dana Farber/Harvard Cancer Centre SPORE
Danish Ankylosing Spondylitis Society
Danish Epilepsy Association
Danish Lung Association
Deutsche Gesellschaft für Muskelkranke
Deutsche Rheuma-Liga Bundesverband
Different Strokes
Associazione Europea della Sindrome di Mc Cure Allbright (Eamas)
Eesti Neeruhaigete Liit
European federation for Haemochromatosis (EFAPH)
Endometrioseforeningen Norge
European Network of (ex-)Users and Survivors of Psychiatry (ENUSP)
Estonian Parkinson Disease Association
Europa Donna Cyprus
EUROPA DONNA-The European Breast cancer organisation
Europa Uomo
European AIDS Treatment Group EATG
european huntington association
European Social Forum of Cyprus (ESFC)
European Tarlov Cyst Alliance
Nationale Vereniging voor Fibromyalgie patiënten Eendrachtig sterk (F.E.S.)
Fibroid Embolisation (FEmISA)
la Fédération Française des Associations et Amicales de malades (FFAAIR)
Fundacion Hispana de Osteoporosis y Enfermeades metabolicas (FHOEMO)
Finnish Diabetes Association
Foreningen af vHL-patienter og pårørende
FSH-Muscular Dystrophy Support Group
Futura
Galactosemie Vereniging Nederland
Gaucher Vereniging Nederland
GFME Glioblastome Association Michèle FNAPSY
Gorlin syndrome group
H.A.E. Belgium
Herpes Viruses Association
Danish heart Foundation HJERTEFORENINGEN
Irish Cancer Society
Irish Heart Foundation
Irish Lupus Support Group
Kawasaki Support Group
Klinefelter Organisation
KRANK und doch AKTKIV
Krebspatienten für Krebspatienten
Leukaemiehilfe RHEIN-MAIN e.V.
Lithuanian arthritis organization
LUPUS FRANCE
Migrensamtokin
MM&WM Patient organisation (CKP)
Selbsthilfegruppe ffür Kinder mit Spina bifida & Hydrocephalus (MMC OÖ)
Morbus-Osler-Selbsthilfe e. V.
Multiple Sclerosis Society
MYELOMA EURONET
NARPD (Paget's Association)
National Aliance of Childhood Cancer Parents Organisations.
National Rheumatoid Arthritis Society
Nationale vereniging Sjogren patiënten
NCRI Consumer Liaison Group
Nederlandse Cystic Fibrosis Stichting
Nederlandse Federatie van Kankerpatiëntenorganisaties, (NFK)
Nederlandse Obesitas vereniging
Nederlandse Rett Syndroom Vereniging
Nephcure International en CNS Nederland
Nederlandse Vereniging van Hemofilie-Patiënten (NVHP)
Patient Advocacy Committee
PDA contact group
Polio-Allianz e.V.
Polish Association of Angioedema Patients' Aid
Polish Diabetes Association
Positive Action
PSYCHEX
Research Advocacy Network
Retina International
ReumaNet vzw
Reumapatiëntenbond
RIMS
Sarcoma UK (also The Sarcoma Trust)
Sarkoidose Selbsthilfegruppe Tirol
Schweizerische Diabetes-Gesellschaft
SENT-Slovenian org. for mental health
Serbia Osteoporosis Society
SHG "Kopfweh" Wien
SIMA, Asociación Sindrome de Marfan
Simba Onlus
SKUC-MAGNUS
Slovak League against Hypertension
SLOVENE CELIAC SOCIETY
Slovenian Lymphoma & Leukaemia patient Association
Stichting PHA Nederland
Stichting Pijn-Hoop
Stichting Rubinstein-Taybi Syndroom (RTS)
Stiftung zur Förderung der KMT Schweiz
STOP AIDS association
Stichting Tubereuze Sclerosis Nederland (STSN)
Association SURRENALES
The Latvian Umbrella Body For Disability Organization (SUSTENTO)
Swedish EDS National Association
Swedish Heart and Lung Transplant Ass.
Thalassaemia International Federation
The British Trust for The Myelin Project
The Children and Youth Rheumatism Association
The CML Support Group
The Daisy Network
The Dystonia Society
The Fragile X Society
The Hepatitis C Trust
The Information Point
The Miscarriage Association
The Multiple Sclerosis Society of Malta
The Pernicious Anaemia Society
ThinkWell
Thyroid UK
Groupe inter-associatif "traitements et recherche thérapeutique (TRT-5)
Tuberöse Sklerose Deutschland e.V.
Unione Nazionale Asmatici (U.N.A)
UK Multiple Sclerosis Society
Valentin association de Pateurs d'anomalies chromosomales
Verein für Galactosämie Schweiz
Von Hippel Lindau (VHL) Family Alliance International
Vanderbilt-Ingram Cancer Center (VICC) Research Advocates
Vlaamse Vereniging voor Bechtarewpatiën
Vereniging voor Mensen met Constitutioneel Eczeem (VMCE)
Vereniging Spierziekten Nederland
International Pompe Association
Werkgroep Hersentumoren vzw
Zagreb Epilepsy Centre