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 does 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 lives 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#21
In this edition, Erika Berg, PhD, hosts a conversation about advocacy in rare disease: Driving Advances in Technology.
Les Fentes de A à Z
A digital dictionary has been developed by the Center of Reference for Clefts and Facial Malformations (MAFACE).
The Rare Disease Gazette#19
In this edition, Erika Berg, PhD, hosts a conversation about advocacy in rare disease: Taking care of caregivers.