Rare Disease Day: Discover Rare Diseases from A to Z
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We shed light on rare diseases to accelerate diagnosis
Discover howOur mission
Fondation Ipsen, under the aegis of Fondation de France, support projects of general interest in science, education, disability and health, with a particular focus on the early detection and care of people living with rare diseases. Fondation Ipsen strives for a future where all rare disease patients receive timely diagnosis, respect, and support.
Our latest stories
Fondation Ipsen at the World Orphan Drug Congress 2025
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Claude Revert: Still Standing
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Yamina’s Life shares patients’ voices at the Fondation Ipsen and Science webinar
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More than Rare: The Journey of George
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Rare Library: Rare Disease Awareness Around the World
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Our newest books
My Coloring Book
A coloring book inspired by the “Les Enfants de la Génétique” collection, designed to raise awareness among young children aged 3 and up about diversity and inclusion.
Raregivers™ Emotional Journey Map Guidebook
One in ten families worldwide are living with uncured rare, chronic and complex diseases – many more are undiagnosed. Our community is global, reaching every remote corner of every country on earth.
Maux rares, mots précieux
On International Rare Disease Day 2026, the Filière AnDDI-Rares is giving voice to those affected by rare diseases. This collective work brings together quotes and emotions that illustrate what it is like to live with a rare disease.
The Rare Disease Gazette #30
In this edition, Erika Berg, PhD, hosts a conversation about BFunding rare disease research: Collaboration to accelerate treatment innovation.
Alternate Funding Mechanisms in Rare Diseases
For decades, rare disease research has been caught between two worlds: public grants that are too short-term to sustain discovery, and private investment that sees too little market potential to engage. Thousands of promising ideas never leave the lab, not because they failed, but because the funding system did. This book is written to change that.
Beyond Sight
Between blind soccer, a passion for manga, and community projects, Christopher Bourgeois forges ahead without slowing down. As a child, teenager, and adult, he learns to reinvent himself and turns every obstacle into a new path.
Il est autiste… et alors ?
Following on from Je suis autiste… et alors ?, published in 2024, Il est autiste… et alors ? is a new awareness-raising tool, this time from the perspective of Alexis Leclaire, a special needs teacher who has been involved with GEMA06 for many years.
SoIn for Society and Inclusivity #5
This new issue of SoIn was born out of this desire. It aims to give a voice to unique journeys, not to put them on a pedestal, but to see them live, act, create, love… just like everyone else.
Discover our activities in 2025
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