Françoise Salama

Francoise Salama

AFM-Téléthon, France
French Muscular Dystrophy Association


Françoise Salama was first elected to the EURORDIS Board of Directors in 1999 and remained on the Board until 2008. After a hiatus of 7 years, she was once again re-elected to the EURORDIS BoD, as a representative of AFM-Telethon, in May 2015.

 Françoise’s son was diagnosed with Duchenne Muscular Dystrophy at the age of 5 and she has been involved with the AFM-Telethon since 1994. Her main interest, at the time, was research & therapeutic development, and networking patients associations and she launched the EuroBioBank project for rare diseases, with the support of EURORDIS and AFM. Françoise was also very much implicated in the early stage of the TREAT-NMD project, networking research in neuromuscular diseases in Europe.

More recently, Françoise has been involved with FITIMA, an organisation founded by Hawa Dramé, based in West Africa, with the aim of bringing precise diagnosis, proper care and access to treatments to patients in countries lacking efficient health systems.

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases