In brief
EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe. It was founded in 1997; it is supported by its members and by the French Muscular Dystrophy Association (AFM), the European Commission, corporate foundations and the health industry.
EURORDIS represents more than 434 rare disease organisations in 43 different countries (of which 24 are EU Member States), covering more than 1,200 rare diseases. It is therefore the voice of the 30 million patients affected by rare diseases throughout Europe.
EURORDIS is a not-for-profit organisation with a stringent financial transparency policy and good governance practices.
A rare disease is a disease affecting less than 1 in 2,000 citizens (in Europe).
Eurordis' Mission
- To build a strong pan-European community of patient organisations and people living with rare diseases
- To be their voice at the European level and - directly or indirectly - to fight against the impact of rare diseases on their lives
European Advocacy
European Institutions:
Committee for Orphan Medicinal Products (COMP) at the European Medicines Agency (EMEA)
Paediatric Committee (PDCO) at the European Medicines Agency (EMEA)
Patients and Consumers Working Party (EMEA)
Rare Disease Task Force (DG Health and Consumer Protection - European Commission)
EU Health Policy Forum (DG Health and Consumer Protection)
European Platforms:
European Patients' Forum (EPF)
European Forum for Good Clinical Practice (EFGCP)
European Platform for Patients' Organisations, Science, and Industry (EPPOSI)
International Alliance of Patients' Organizations (IAPO)
EFPIA Think Tank
Pan-European Blood Safety Alliance (PBSA)
Drug Information Association (DIA) in Europe
What we do
Our achievements
Eurordis in brief
View this information in pdf format >
The Rare Disease Platform
EURORDIS
is a partner in the Rare Disease Platform, in Paris,
with:
Maladies Rares Info Services
Alliance Maladies Rares
Orphanet
GIS - Institut des Maladies Rares
Author: Eurordis
Photos: members of Eurordis © Eurordis; baby & doctor © Jim Gathany / Centers for disease control and prevention ; researcher © Pan American Health Organization ; rare disease patient, Bibian Verstegen © Jose Verstegen-Ruijs / Stichting voor AfweerStoornissen - (SAS)
