Rare Diseases
Rare but not alone
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. Our program brings together world experts to improve this dire situation.
We put
patients
first
Digital Platform
Come and check it out!
Fondation Ipsen brings you a variety of content to help advance rare disease detection. Browse our webinars, videos, podcasts and educational courses to discover cutting-edge science and meet world experts. Discover educational stories with your children, join us on a historical journey, and advocate to improve the lifes of patients.
BookLab
Books for all
Fondation Ipsen’s publishing house publishes books for all ages. Pick a book. It’s free !
What's new?
The Rare Disease Gazette #5
In this issue of our “Rare Disease Gazette”, discover a discussion on Artificial Intelligence, which may help rare disease diagnosis.
Webinar: The psychological cost of rare disease
In this webinar, we will address how the medical community can better support those living with a rare disease as well as their caregivers.
Paralympic Games
Discover 3 original manga books on 3 paralympic athletes ! A project made in collaboration with the French Paralympic Sports Committee and 3 athletes.