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?
Webinar – Combating the fragmentation of data and disc
This webinar brings together key opinion leaders to discuss the current and future needs of patients, and how innovators, doctors, scientists, drugmakers, and policymakers can work efficiently together to deliver solutions to the millions of diagnosed and undiagnosed patients in need.
Jonas and the Children of the Moon
In this podcast, our young hero, Jonas, is searching for his sister and arrives in a medieval world where local people live by night and hide by day. Why ?
The Story of the Human Genome Project
Discover our new podcast on the history of the human genome project : from the genesis of an international consortium to the publication in 2003.