Who are they?
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 800 rare disease organisations, from more than 70 countries, that Work together to improve the lives of the 30 million people living with a rare disease in Europe.
EURORDIS represents 30 million people living with over 6000 distinct rare diseases and advocates Within the European Commission and other European institutions for policies that address the needs of people living With a rare disease and their families.
What they do?
EURORDIS seeks to improve the quality of life of people living with rare diseases in Europe through advocacy at the European level to support research, diagnosis, treatment and independent living of people living with a rare disease..
By connecting people living with a rare disease, families and rare disease organisations, as well as by bringing together all stakeholders and mobilising the rare disease community,
EURORDIS strengthens the voice of people
living with a rare disease and shapes research, policies and services.
EURORDIS also supports the creation and development of rare disease national alliances and disease-specific European federations and networks.
EURORDIS is supported by its members and by the AFM – Téléthon, the European Commission, corporate foundations and the health industry.
EURORDIS was founded in 1997