In brief

EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases. We are dedicated to improving the quality of life of all people living with rare diseases in Europe.

The voice 30 million rare disease patients in Europe

Currently, EURORDIS represents more than 492 rare disease organisations in 46 different countries (of which 25 are EU Member States), covering more than 4,000 rare diseases.

Founded in 1997, we are supported by our members, the French Muscular Dystrophy Association (AFM), the European Commission, corporate foundations and the health industry.

With a not-for-profit organisation status, we maintain a stringent financial transparency policy and good governance practices.

What we do

EURORDIS aims at improving the quality of life of people living with rare diseases in Europe through advocacy at the European level, support for research and drug development, networking patient groups, raising awareness and other actions designed to fight against the impact of rare diseases on the lives of patients and family.

EURORDIS in brief

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 (EMA)
Paediatric Committee (PDCO) at the European Medicines Agency (EMA)
Patients and Consumers Working Party (EMA)
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

The Rare Disease Platform

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)