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 – Bringing Rare Disease care to underserved po
This new free webinar will discuss how new systems and technologies can help those with rare diseases living in underserved countries and communities.
Diabetes
My Life Beyond is a free collection of comic books created by a patient and his physician. Discover Emily enjoying her life despite her diabetes.
Neurofibromatosis #1
My Life Beyond is a free collection of comic books created by a patient and a physician. Discover the story of Leo who lives with neurofribromatosis.