Yann Le Cam is a patient advocate who has dedicated over 30 years of professional and personal commitment to health and medical research NGOs in France, Europe and the United States in the fields of cancer, HIV/AIDS and rare diseases. Yann was the initiator in 1993 and one of the founder EURORDIS-Rare Diseases Europe in 1997, for which he became the Chief Executive Officer from 25 years, from 2000 to 2024. Yann initiated Rare Diseases International (RDI) in 2009 and one of its founders in 2014. He was an elected member of the RDI Council, its Treasurer and its Chair of the RDI Policy Committee until 2025. He is a founding member of the NGO Committee for Rare Diseases (United Nations, New York) in 2014 and its Vice-Chair. Yann was a Co-Chair of the Global Commission to End the Diagnostic Odyssey of Children with Rare Diseases since its launch in 2018 until 2025. Past positions include: World Economic Forum’s Health Stewards Board 2020-2023; member of the Management Board of the European Medicines Agency (EMA) 2017-2019; member of the Committee for Orphan Medicinal Products (COMP) at the EMA, served 9 years 2000-2009, two elected mandate as Vice-Chair for 6 years; 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 Commission Expert Group on Rare Diseases, 2014 – 2017;