Dr Alexandre Méjat, who is personally affected by Bethlem muscular dystrophy, now represents the patient voice within consortia such as the European NeuroMuscular Centre (ENMC) and EURORDIS (of which he is a member of the executive committee), as well as ERN-EuroNMD, the European Joint Program on Rare Diseases (EJP-RD) and the International Rare Disease Research Consortium (IRDiRC), actively promoting both scientific collaboration and patient involvement at all steps of research.
After obtaining his PhD in molecular and cellular biology, Alexandre worked on neuromuscular junction defects and Emery-Dreifuss muscular dystrophy in France and the USA. He led a research group in Lyon (France) for eight years and was a member of the board of directors of I-Stem (Evry, France; 2005-2017) and AFM-Téléthon (Evry; 2010-2017) before joining the International Scientific Networks Department, becoming its Head in 2023.