Rare disease advocacy

Rare Disease Advocacy Groups


  • EURODIS is a non-government patient-driven alliance of patient organizations and individuals active in the field of rare disease, dedicated to improving the quality of life of all people living with rare diseases in Europe. .
  • The European Commission hosts a thematic portal whose main objective is to provide European citizens with easy access to comprehensive information on Public Health initiatives, including rare diseases, and programmes at EU level.
  • Orphanet is the reference portal for information on rare diseases and orphan drugs, for all audiences. Orphanet's aim is to help improve the diagnosis, care and treatment of patients with rare diseases. Orphanet is led by a European consortium of about 40 countries. National teams are responsible for the collection of information on specialised clinics, medical laboratories, ongoing research and patient organisations in their country. The French coordinating team is responsible for the infrastructure of Orphanet, management tools, quality control, rare disease inventory, classifications and production of the encyclopaedia. The site is translated into 7 languages: French, English, Spanish, German, Italian, Portugese, and Dutch.


 Last updated on 17/06/2018 at 11:55