Françoise Salama

Francoise Salama

AFM-Téléthon, France
French Muscular Dystrophy Association

e-mail: fsalama@hotmail.fr

www.afm-telethon.fr

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.

 
 
La voce dei malati rari in EuropaEURORDIS Rare Diseases International, la voce internazionale dei malati rariRare Disease International RareConnect è un'iniziativa di EURORDIS che mette in contatto malati, famiglie ed esperti per condividere esperienze in un forum multilingua e moderato RareConnect Il Programma Rare Barometer è un’iniziativa di EURORDIS volta a condurre indagini con l’obiettivo di trasformare le esperienze delle persone affette da malattie rare in cifre e fatti che possono essere condivisi con i decisori politici.Rare Barometer La Giornata delle Malattie Rare, una campagna di sensibilizzazione internazionale che si svolge l'ultimo giorno di febbraio di ogni anno.Rare Disease Day La Conferenza Europea biennale sulle Malattie Rare è il più grande incontro di soggetti interessati al tema delle Malattie Rare in Europa. L'ECRD è un'iniziativa di EURORDISEuropean Conference on Rare Diseases