International

Organized in partnership with Science magazine, the “Redefining Connection” webinar gave Yamina Hsaini, content creator and advocate for patients living with rare diseases, the opportunity to share her journey and her commitment to raising awareness and giving a voice to young people affected by these conditions. Giving…

A documentary to raise awareness on Mosaic Variegated Aneuploidy (MVA) Syndrome To raise awareness of rare diseases and support families facing the many hurdles of navigating complex, little-known conditions, we are happy to present our newest short documentary: “More than Rare: The Journey of George”. This short film spotlights the…

A Historic Turning Point for Rare Diseases and Youth Engagement At the 77th World Health Assembly (WHA) in Geneva, we stood at the heart of two defining moments for the global rare disease community: the first in-person gathering of the Youth Leadership Programme (YLP), and the historic adoption…

International Women’s Rights Day: Explore Rosalind Franklin’s History On International Women’s Rights Day, we are delighted to present our podcast Rosalind Franklin, Quelle(s) Histoire(s)! Part of our ‘Science, Quelle(s) histoire(s)’ series, this episode explore the journey and challenges of a woman scientist in the mid-20ᵉ century. You will…

Our president Dr James Levine shared insights on innovative funding mechanisms for rare diseases at the World Orphan Drug Congress Europe.