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?
Webinar – Advocacy in rare disease: Crafting the publ
In this webinar, we invited experts in communication, public relations, and influencing to discuss strategies and tactics to advance advocacy for rare disease
L’Orphelin Revert
Discover the story of Claude Revert, a marathon runner, who lives with a rare disease: Hirschsprung’s disease. Despite the pain and multiple surgeries, Claude is still determined to move forward.
Rare Sounds
This free poetry book collects poems about patients living with a rare disease. This book was written by Roopa Ramamoorthi, a scientist and a poet.