J. Andoni URTIZBEREA, (MD, MSc)

J. Andoni URTIZBEREA, (MD, MSc), aged 60, is certified in paediatrics and PMR (physical medicine and rehabilitation) from Paris University, France (1983-1987). After graduating from the Institut d’Etudes Politiques de Paris in 1987 cum magna laude, he served many years as Medical Director of the AFM-Telethon (the French Muscle Dystrophy Association) and later as the Scientific Director of the European Neuromuscular Center (ENMC). He contributed to the establishment of many worldwide networks in myology, an emerging discipline dedicated to muscle and related disorders (Duchenne muscular dystrophy and spinal muscular atrophy among others). He is currently a part-time clinical myologist in Hendaye, south of France (Hôpital Marin, APHP) and deputy coordinator of the French Neuromuscular Network (FILNEMUS) in Marseilles. 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 academia, 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. Dr. Urtizberea knows quite well the Indian Ocean. He contributed to the discovery of a specific form of limb girdle muscular dystrophy in the Reunion Island (calpainopathy) and collaborated with Mauritian experts of the field in a distant past. When he was a young medical student, he also served as a benevolent in Pamplemousses and Rodrigues. More recently (2016), and together with Prof. André Megarbané (Beirut, Lebanon), he founded ‘Maladies Orphelines Sans Frontières’ (MOSF) an NGO dedicated to humanitarian relief in the field of rare diseases.