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?
Rare Visions
It has been an awe-inspiring journey to read and engage with the powerful voices of these poets, who have shared their experiences of visual impairment and vision loss.
The Rare Disease Gazette#22
In this edition, Erika Berg, PhD, hosts a conversation about Blooming against odds: Successfully navigating mental health in rare disease.
Living with a Rare Disease Worldwide. Volume 3
Advances in artificial intelligence and biotechnology have spurred excitement in rare disease communities in the past year…