Dr J. Andoni Urtizberea

J. Andoni URTIZBEREA, (MD, MSc), aged 65, is a French physician trained in Paris University (1983-1987) and certified both in paediatrics and PMR (physical medicine and rehabilitation). After graduating in parallel from the Institut d’Etudes Politiques de Paris in 1987, he served many years as Medical Director of the AFM-Telethon and then as General Delegate of the Institut de Myologie of Paris (1993-2000). As Scientific Director of the European Neuromuscular Center in the Netherlands (ENMC, 1999-2005), and with the AFM-Téléthon’s support, he contributed to the establishment of many global networks in myology. He served till December 2019 as part-time clinical myologist in Hendaye Hospital, France (APHP trust) and concomitantly as deputy coordinator of the French Neuromuscular Network (FILNEMUS) in Marseilles. In the past twenty years, he headed various worldwide educational events dedicated to myology (in Europe, Russia, Latin America and, more recently in the Middle-East). He is currently a faculty at the Institut de Myologie of Paris, France, running the AcadeMYO project and the Summer Course. He is a regular visiting professor in various countries and a consultant for several pharma companies. Ideally located at the intersection of industry, patient advocacy and academia, his main objective is to raise more awareness about these rare conditions notably in emerging countries. More recently (2016), and together with Prof. André Megarbané (Beirut, Lebanon), he co-founded ‘Maladies Orphelines Sans Frontières’ (MOSF), now ‘Myologie Sans Frontières’, a nonprofit NGO dedicated to the promotion of neuromuscular disorders in low-income countries.