The French Muscular Dystrophy Association (AFM-Téléthon) is composed of patients and their families who are affected by genetic, rare and progressive diseases that lead to severe disabilities.
The European Patients’ Academy on Therapeutic Innovation (EUPATI) is a multi-stakeholder public-private partnership. It provides education and training to increase the capacity and capability of patients and patient representatives to understand and meaningfully contribute to medicines research and development (R&D), and to improve the availability of medical information for patients and other stakeholders.
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 932 rare disease patient organisations from 73 countries. EURORDIS seeks to improve the quality of life of people living with rare diseases in Europe through advocacy at the European level, support for research and medicines development, facilitating networking amongst patient groups, raising awareness.
Myobase is a bibliographic database on neuromuscular disorders, created by AFM-Téléthon
The European portal for rare diseases and orphan drugs. Orphanet is a unique resource that brings together and enhances knowledge on rare diseases to facilitate and improve the diagnosis, care, and treatment of patients with rare diseases. It provides an inventory of rare diseases, as well as directories of expert centres, clinical trials, registries, orphan drugs and many more.
RareConnect is a safe, easy to use platform where rare disease patients, families and patient organisations can develop online communities and conversations across continents and languages
Since 1993, the Centre National d’Information et de Rencontre du Handicap has had an open ear for people with disabilities, their families, professionals and, in general, anyone looking for specific information.
The Téléthon Luxembourg raises funds to support research into rare diseases and psycho-social support for people living with a rare disease. Téléthon Luxembourg is run by the Fondation Lions District 113 Luxembourg.