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 – Uniquely singular: Exploring what it means t
In the final webinar in our 2021 series on rare diseases, we will debate on the importance of understanding our rarity and uniqueness
The Rare Disease Gazette #6
In this 6th Rare Disease Gazette, find a discussion with leading experts on the psychological cost of rare disorders for patients, families and caregivers.
Webinar – What’s the plan? From detection to diagnos
In this webinar, we will discuss strategies for finding new treatments for rare diseases and how these solutions might be implemented.