Rare Diseases

Rare but not alone

Our Mission

Accelerate rare disease diagnosis

There are 7,000 rare diseases affecting 300 million people worldwide. 75% of patients are children. 1 in 2 patients do not have an accurate diagnosis. A quarter of patients wait 4 years to get a diagnosis. This program brings together world experts to improve this terrible situation.

We put


Our Digital Platform

Making rare diseases more visible

Fondation Ipsen brings you a variety of content to help advance rare disease detection. Join us in webinars, videos, podcasts and educational courses to discover cutting-edge science and meet the world experts. Discover educational stories with your children, join us on a historical journey and advocate to improve the lifes of patients.


Books for all

Fondation Ipsen’s publishing house publishes books for all ages.                                       Come in and pick a book. It’s free !

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