Yann Le Cam

Yann Le Cam is an Entrepreneur in Residence, advising VOZ and select clients on strategy, patient advocacy, and patient engagement. Yann 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 founders of EURORDIS-Rare Diseases Europe in 1997, for which he became the Chief Executive Officer for 25 years, from 2000 to 2024.

Yann is one of the founders of Rare Diseases International (RDI) and was an elected member of the RDI Council as its Treasurer, and Chair of the RDI Policy Committee from 2015 to 2025. He is a founding member of the NGO Committee for Rare Diseases (United Nations, New York) in 2014 and its Vice Chair. His strategy led to the integration of rare diseases in the UN Political declaration on Universal Health Coverage — the adoption of the UN Resolution on addressing the challenges of people living with rare diseases and their families — and the future adoption of a WHO Resolution for a Global Action Plan on Rare Diseases.

Yann was a frontline advocate for the adoption of European regulations that impact the lives of rare disease patients, including the EU regulations on orphan medicinal products, pediatric use of medicines, and advanced therapies. He promoted the Commission Communication on Rare Diseases, the Council Recommendation on Actions on Rare Diseases, the Directive on Cross-Border HealthCare, the EU Regulation on HTA, and core elements in the ongoing revision of the EU Pharmaceutical Legislation.

Yann’s specific contributions include engaging in multi-stakeholder dialogues, designing the approach of national plans/strategies for rare diseases in EU and beyond for over 20 years. In 2008, he launched and has since grown the impactful world Rare Diseases Day, shaping the innovative 24 European Reference Networks for Rare Diseases. He also led the Rare 2030 Foresight Study that lays a critical foundation for the future European Strategy for Rare Diseases.

Recent past positions include serving as a member of the World Economic Forum’s Health Stewards Board; member of the Management Board of the European Medicines Agency (EMA); Chair of the Therapies Scientific Committee of the International Rare Diseases Research Consortium (IRDiRC); Vice Chairman of the EU Committee of Experts on Rare Diseases (EUCERD); Co-Chair of the Global Commission to End the Diagnostic Odyssey of Children with Rare Diseases; member of the Commission Expert Group on Rare Diseases; and member of the Committee for Orphan Medicinal Products (COMP) at the EMA, where he served nine years, including two terms (six years) elected as Vice Chair.

He has three daughters, the eldest of whom is living with cystic fibrosis. His engagement in public health, healthcare, and advocacy stemmed from the experience of a family affected by different cancers, HIV, and rare diseases. Yann received his MBA from HEC Paris, majoring in strategy, and a certificate in Strategic Alignment from the Saïd Business School of Oxford University.