Disease specific organisation
- Eur. Dystonia Federation EDF
- Eur. Alliance of Neuromuscular Disorder Associations
- Eur. Cancer Patient Coalition ECPC
- Eur. Dyslexia Association EDA
- Eur. Epidermolysis Bulosa DEBRA
- Eur. Fededration of Hereditary Ataxias WFHA
- Eur. Federation of Crohn's & Ulcerative Colitis Associations EFCCA
- Eur. Gaucher Association EGA
- Eur. Haemophilia Consortium EHC
- Eur.Network for Research on Alternating Hemiplegia in childhood ENRAH
- Heart-EU
- International Pompe Patient Associatio Europe IPA/Eur
- Retina Europe / Fighting Blindness RE / FB