Our national experts
MD-PhD Myologist, Geneticist.
MD-PhD Médecin Rééducateur.
Our international experts
J. Andoni URTIZBEREA, (MD, MSc) is certified in paediatrics and PMR (physical medicine and rehabilitation) from Paris University, France. He also graduated from the Institut d’Etudes Politiques de Paris cum magna laude. As Scientific Director of the European Neuromuscular Center (ENMC) and former Medical Director of the AFM-Telethon (the French MDA), he contributed to the establishment of many worldwide networks in myology, an emerging discipline dedicated to muscle and related disorders. He is currently a part-time clinical myologist in Hendaye, south of France (Hôpital Marin, APHP), deputy coordinator of the French Neuromuscular Network (FILNEMUS) in Marseilles and member of the Executive Board of the TREAT-NMD Alliance. Over the past twenty years, he headed various worldwide educational events dedicated to myology (in France, Russia, Latin America and, more recently in the Middle-East). He is a regular visiting professor for the Ministry of Health of Kuwait and a consultant for many pharmas involved in the field. Ideally placed at the intersection of industry, patient advocacy groups and academics, his main objective is to raise more awareness about these rare conditions notably in emerging countries and more specifically in the context of novel cutting-edge therapies. In 2016 with Prof. André Megarbané (Beirut, Lebanon), he founded "Maladies Orphan disease without boarders" (MOSF), an NGO dedicated to humanitarian aid in the field of rare diseases.
Neurologist at the University Hospital of Limoges in France, she is involved in medical expertise in Africa and in helping screening many patients in West Africa.
Molecular Biologist at Cochin Hospital in Paris, France. Supervisor for daily protein and molecular diagnostic activities at Inserm. She has an outstanding experience in the field of diagnosis and genetic counselling. A reference for DMD and LGMD. She is also involved in the training of doctors in West Africa through the West African Network against Muscular Dystrophy and helps screen many patients in Africa.
Physiothérapeute experte en balnéothérapie à l’hôpital de Montebelluna et Castelfranco Veneto dans la province de Treviso en Italie. Elle est très impliquée dans les œuvres sanitaires non lucratives.