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#14
In this Rare Disease Gazette, some of the world’s leading experts discussed about the profoundly personal side of rare disease, to humanize the therapeutic journey of patients.
Promising Practices for Addressing the Underrepresentation o
This report includes findings, conclusions and recommendations for adressing gender parity in Science and Medecine
Rare Diseases, from A to Z
This new and free alphabet book invites to discover the diversity and variability of rare diseases. 26 letters, 26 rare diseases.