Rare But Not Alone

Fondation Ipsen’s mission is to accelerate rare disease diagnosis.

About Fondation Ipsen

For decades, Fondation Ipsen has worked to improve lives by providing scientific information to the public and connecting the scientific community. It was established in 1983, under the aegis of the Fondation de France. Since then, it has contributed to major advances in biological and medical research by organizing numerous scientific conferences. The Fondation also encourages creativity in the scientific community by awarding prizes to innovative researchers, with a focus on neuroscience, endocrinology, longevity and oncology.

Key Facts


the Fondation’s BookLab circulated 150,000 books and magazines in 50 countries in four languages, including the Little Issue, a scientific magazine for children in underserved communities.


in 2020, Fondation Ipsen’s podcast channels attracted over 36,500 listeners from around the world.



the Fondation organized three webinars on COVID-19 in partnership with Science, the world’s largest scientific journal, each attended by 40-60,000 people.


More than 44,700 learners (students and healthcare professionals) in over 100 countries received Institut Pasteur/ Fondation Ipsen training in international public health, notably including training in reemerging viruses.

Our Strategy: Rare But Not Alone

Building on Fondation Ipsen’s legacy of engaging the public and the scientific community, our “Rare But Not Alone” strategy focuses on rare disease awareness and early detection.

Our focus is ambitious, but it must be realized in order to end the unnecessary suffering caused by delayed detection and diagnosis for patients around the world. To deliver on our strategy, we will:

  1. Amplify the voices of patients with rare diseases and those of their caregivers
  2. Develop new rare disease communication strategies for children
  3. Engage leading science journals and journalists to report on rare disease detection
  4. Reach underserved communities to promote awareness of rare diseases
  5. Develop international open-access communications and training in rare disease detection
  6. Fight discrimination and stigma faced by patients living with rare disease and handicaps
To learn more about Fondation Ipsen and our work, please visit our website.
© Ipsen Pharma, 65 Quai Georges Gorse, 92100 Boulogne-Billancourt, France. All rights reserved - 2021