Alexandre Mejat

AFM-Telethon, France


Alexandre Méjat was elected to the Board of Directors of EURORDIS in May 2018.

He is personally affected by a Bethlem myopathy and his parents have been implicated in the French Telethon organization since 1987.

PhD in molecular and cellular biology by training, Alexandre has been working on neuromuscular junction defects and Emery Dreifuss muscular dystrophy in France and USA. He led a research group in Lyon during 8 years before becoming Scientific International Affairs manager for AFM Telethon.

Alexandre was previously member of the Board of Directors of the Institute for Stem cells research (I Stem, Evry, France. From 2005 to 2017) and AFM-Telethon (Evry, France. From 2010 to 2017). He is now implicated in several international networks and consortia such as the European NeuroMuscular Center (ENMC), the ERN-EuroNMD, European Joint Program on Rare Diseases (EJP-RD) and the International Rare Diseases Research Consortium (IRDiRC).

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