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?
Life with Diabetes. Your control guide
This new guide, offers by Fondation Ipsen, is based on medical research and provide many tips to manage diabetes (regular monitoring, physical activity, diet, etc.).
The Rare Disease Gazette #13
In this new issue, international scientists discussed about the need of internationalize databases and patient registries for rare disease.
The Rare Disease Gazette #11
In this new issue, some of the world’s leading experts in rare diseases discussed about personalized therapies.