J. Andoni URTIZBEREA, (MD, MSc), aged 58, 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 in 1987 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.