Referred to by NORD Founder Abbey S. Meyers as “the key to rare disease advocacy in Europe,” Yann Le Cam stepped down as Chief Executive Officer of EURORDIS – Rare Diseases Europe in March of this year. This milestone capped off 25 years at the helm of the organization he co-founded and grew into one of the world’s greatest beacons of rare disease advocacy.
Yann’s journey began 34 years ago when the eldest of his three daughters was diagnosed with cystic fibrosis. Described by friends, colleagues, and collaborators as a strong, charismatic leader and a dreamer, Yann’s ability to organize and build international partnerships has yielded many accomplishments of deep importance to the advancement of rare disease awareness and care globally.
Yann’s early outreach to leaders and partner organizations laid the groundwork for what would become the European Organization for Rare Diseases (EURORDIS). At the French Senate in 1996, rare disease organizations from the UK, Denmark, Sweden, Italy, Spain, and France—joined by NORD Founder Abbey S. Meyers—advocated for a European Union Regulation on Orphan Medicines, which gave rise to the creation of EURORDIS in 1997. Today, EURORDIS – Rare Diseases Europe is a unique multi-national, multi-lingual, multi-cultural alliance of over 1,000 member organizations across 53 countries. They have established rare diseases as a sustainable public health priority and actively contributed to 10 EU legislations shaping the policy framework for diagnosis, treatments, support, and social inclusion of people living with a rare disease.
Yann was critical in shaping national strategies for rare diseases in the EU and beyond and in designing the innovative 24 European Reference Networks for Rare Diseases. He helped initiate Rare Diseases International (RDI) in 2009, for which he is an elected member of the Council and Chair of the Advocacy Committee. He serves as a founding member and continuing Vice Chair of the United Nations Non-Governmental Organizations Committee for Rare Diseases and has also served as Co-Chair of the Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease since its launch in 2018. Recently, he led the Rare 2030 Foresight Study that lays the foundation for a future European Action Plan for Rare Diseases.
Most visibly, EURORDIS founded and grew Rare Disease Day® into an international day of awareness under Yann’s leadership. In 2024, 106 countries officially participated in Rare Disease Day®. For many in our community, this is the first day they make themselves truly visible to others to voice the challenges of living with a rare disease. For many others, it has become a day for impassioned and strategic advocacy.
Yann Le Cam has left a lasting impact on NGOs in France, Europe, and the United States in the fields of cancer, HIV/AIDS, and rare diseases. The collaborations he forged will continue to deliver progress for years to come.