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 voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases