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?
Webinar – The urgent need to internationalize database
This webinar will interrogate global experts on how to drive international databases for helping patients living with a rare disease worldwide.
The Rare Disease Gazette #12
In this Rare Disease Gazette, experts discuss on how patients living with a rare disease in underserved communities can benefit from medical care
Rare Disease : Innovations in Diagnostics and Therapeutics (
Discover a second cycle of free conferences on diagnostic and therapeutic innovations on Rare Diseases. For patients, families and caregivers.