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.

 
 
A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.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 Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases