EURORDIS

EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases. It is dedicated to improving the quality of life of all people living with rare diseases in Europe and is the voice of 30 million rare disease patients in Europe.

Currently, EURORDIS represents more than 500 rare disease organisations in 49 different countries (of which 24 are EU Member States), covering more than 4,000 rare diseases. Founded in 1997, it is 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, it maintains a stringent financial transparency policy and good governance practices.

EURORDIS aims at improving the quality of life of people living with rare diseases through advocacy at the European level, support for research and therapy 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.

Fighting Blindness has been a member of EURORIDS since its founding and believes strongly in its work. The EURORDIS team has strengthened the voice of patients with rare disease throughout the EU and beyond and is one of the largest and most successful patients groups, achieving significant goals over the past 15 years.

GRDO, the Irish National Alliance for Rare Diseases, is represented at the EURORDIS Council of National Alliances. Avril Daly, CEO of Fighting Blindness and Chair of GRDO, is also Vice President of EURORDIS.

Our Mission

• To build a strong, pan-European community of patient organisations and people living with rare diseases, and

• To be their voice at the European level and to fight directly or indirectly 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)

Pediatric 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)