Rare Diseases
Rare but not alone
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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.
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We put
patients
first
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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?
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SoIn for Society and Inclusivity #2
As we prepare for the grand event of Paris 2024, our journal will focus on sports to support this event that will transform our daily lives while bringing joy, passion, and emotion. But beyond the results, it is the stakes of the Games that challenge us.
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Uncovering Rare Disease. Volume 3
Science (American Association for the Advancement of Science) magazine, in collaboration with Fondation Ipsen, offers international scientific webinars for the general public. In 2023, these webinars focused on advocacy in rare diseases.
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Paroles d’aidants
Supported by the associations Âges et Vie 94 and Delta 7, Paroles d’aidants brings together the moving testimonies of those who dedicate their lives to supporting their loved ones in situations of dependency.