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?
Disability: affectivity, sexuality and dignity
Discoveer our new free book on disability. This book tackles with dignity, sensitive questions for a constructive reflection on disability
Rare Disease : Innovations in Diagnostics and Therapeutics (
A series of 2 conferences on Innovation in diagnostics and therapeutics in Sickle Cell Disease and Rare Disease, a symposium organized by UCSF Innovation Ventures.
Webinar – Humanizing the support of patients living wi
For this last 2022 webinar, our guests will share ideas on how to improve the humanistic support of patients with rare diseases and their families