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
Alternate Funding Mechanisms in Rare Disease
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.
Well-Being in Rare Diseases
Living with a rare disease is not only a medical experience—it is a human one. It reaches into every part of life: the body that struggles, the mind that questions, the family that hopes, and the community that rallies. This book began with that truth and has followed it through the many ways people find comfort, meaning, and strength when medicine alone is not enough.
The Rare Disease Gazette #29
In this edition, Erika Berg, PhD, hosts a conversation about Building strength together: How rare disease caregivers form communities to support each other and their loved ones.
Little Issue #14
Little issue is a free magazine for children living in underserved communities. It contains scientific and educative activities.
Little Issue #13
Little issue is a free magazine for children living in underserved communities. It contains scientific and educative activities.
Discover our activities in 2025:
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