Yann Le Cam

Yann was one of the founders of EURORDIS-Rare Diseases Europe in 1997. He has been the organisation’s Chief Executive Officer since 2000. Through EURORDIS, Yann was a driving force behind the initiation of Rare Diseases International. In addition to serving as RDI Treasurer, he is Chair of the RDI Advocacy Committee. Yann was a founding member of the NGO Committee for Rare Diseases (United Nations, New York) in 2014 and is its vice-chair. He is a co-chair of the Global Commission to End the Diagnostic Odyssey of Children with Rare Diseases since its launch in 2018. Yann is a member of the World Economic Forum’s Health Stewards Board from 2020 and of its Global Precision Medicine Council since 2019. His recent past positions include: Member of the European Medicines Agency’s (EMA) Management Board 2016 – 2019; Chair of the Therapies Scientific Committee of the International Rare Diseases Research Consortium (IRDiRC), 2013-2017; Vice-Chairman of the EU Committee of Experts on Rare Diseases (EUCERD), 2011 – 2013; and a member of the former Commission Expert Group on Rare Diseases, 2013 – 2016. He was also one of the first patient representatives appointed to the Committee for Orphan Medicinal Products (COMP) at the EMA, where he served for 9 years and was its elected vice-chair for 6 years. Yann holds an MBA from HEC Paris. He has three daughters, the eldest of whom is living with cystic fibrosis.