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. This program brings together world experts to improve this terrible 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. 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.
BookLab
Books for all
Fondation Ipsen’s publishing house publishes books for all ages. Come and pick a book. It’s free !
What's new?
Gene therapies for Rare diseases
Short videos to explain how works gene therapy for rare diseases. These therapies are now fully fonctionnal and save many patients.
The Rare Disease Gazette#2
On this new issue find a conversation with world’s experts on rare disease diagnosis and the history of acromegaly.
Webinar: Detecting rare disease
This webinar examined the benefits and limitations of genetic testing, recent advances, and new technologies (artificial intelligence) which might help uncover hidden rare diseases.