News

A 100% Inclusive Manga “Life is movement” – Christopher Bourgeois, visually impaired, blind football (cécifoot) player Un autre regard (“Another Perspective”) is a manga that retraces Christopher’s life, his challenges, and his victories, while immersing the reader in the world of blind football (cécifoot), a team sport played…

From 27 to 29 October 2025, the Fondation Ipsen participated in the World Orphan Drug Congress in Amsterdam, one of the leading international gatherings dedicated to innovation and collaboration in the rare disease ecosystem. Our President took part in two high-level panel discussions, sharing the Foundation’s perspective on how to…

“The marathon is a fight, just like my life — it’s my way of showing that I exist.”— Claude Revert Fondation Ipsen is proud to present the documentary “Claude Revert: Still Standing” a film that…

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…

To promote awareness of rare diseases from an early age, the Rare Library project aims to make illustrated books accessible in multiple languages for children around the world. This collaborative initiative relies on a network of national patient alliances to ensure that each book is culturally adapted and…

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…

“My name is Maxime Vindrier, I’m 26, and I’m autistic. I have tons of passions I could talk about endlessly—but we’ll get to that later. What really gets to me are all the clichés and false ideas about autism. Honestly, sometimes I just want to…

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…

Publication of the second volume of Rare Diseases from A to Z For the Rare Disease Day, we’re proud to announce the publication of the second volume of Rare Diseases from A to Z! Developed in collaboration with the Rare Disease Expertise Platform of Bourgogne-Franche-Comté (PEMR-BFC), this book raises awareness…

Discover powerful stories in our new collection of articles: Living with a Rare Disease Worldwide. Volume 3

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