While rare diseases impact millions of patients, the journey that each person undertakes for diagnosis and treatment is unique. Fondation Ipsen is privileged to support the plight of patients with rare disease.
Raising awareness of rare diseases and promoting their early detection and diagnosis
Fondation Ipsen, a charity under the aegis of Fondation de France, support projects of general interest in science, education, disability and health, with a particular focus on the early detection and care of people living with rare diseases. Fondation Ipsen strives for a future where all rare disease patients receive timely diagnosis, respect, and support.
Fondation Ipsen’s management principles emphasize transparency, independence, and ethical standards, ensuring that all our activities are conducted with the utmost integrity.
Learn about our initiatives:
LEARN
By integrating insights from both patients and experts, Fondation Ipsen ensures all initiatives are grounded in real-world experiences and cutting-edge scientific research.
From patients
By prioritizing rare patients and family voices, Fondation Ipsen ensures all initiatives are tailored to meet the needs of the rare disease community.
- Needs Assessment: through interviews with 45 rare disease organizations in the U.S. and Europe, Fondation Ipsen assessed the financial, educational, and quality-of-life impacts on caregivers of children with rare diseases.
From experts
Fondation Ipsen collaborates with rare disease experts around the world and supports efforts based on the latest scientific research and clinical expertise.
- Webinars with Science/AAAS: bimonthly webinars about rare diseases bringing together international leading authorities and rare patient voices.
- Rare Disease Conversations with Children’s National Rare Disease Institute: grand rounds featuring prominent figures discussing the latest advancements in rare disease care.
DO
Fondation Ipsen joins forces with worldwide experts, healthcare institutions, and advocacy groups committed to making a lasting impact on people affected by rare diseases.
Collaborate to Better Advocate
- Rare Disease Day: promoting the globally coordinated movement in underserved regions by supporting newly-joined national alliances in 25 countries.
- Fondation de France Working Group: uniting foundations addressing rare diseases to share expertise, avoid project duplication, and raise awareness.
- Mini Grants: awarding 51 mini grants to support high impact projects (examples include ARSLA Short Story Competition, Mangomics Access for more accessible mangas).
Innovate in the Rare Disease Space
- International Symposia: UCSF: innovation on diagnostics, LaunchBio: venture philanthropy, WODC: panel and collaboration, European Rare Diseases Research Alliance, DACMAR process to promote biotech.
Champion Inclusivity
- Young Caregivers Respite Stay: organizing an interregional stay for young caregivers to benefit from a summer break and meet peers.
- Jaccéde: collaborating with CAPSAA in building a platform providing free information on the accessibility levels of public places.
- Para-athlete: supporting Anne Claveau, a double French Handbike Champion that lives with a rare disease.
- Court Devant Film Festival: supporting the collaboration between artists and individuals living with disabilities.
TEACH
Under the labels Fondation Ipsen Press and Fondation Ipsen BookLab, Fondation Ipsen publishes books focused on education and raising awareness about health, disability, and rare diseases. These books are distributed free of charge, in print and/or digital formats, ensuring equitable access to valuable information worldwide: https://www.fondation-ipsen.org/books/
Key book series
- Children of Genetics (3-5 years old): illustrated books to explain the challenges faced by families affected by rare diseases.
- Little Issue (from 6 years old): educative quarterly magazine aimed at children in South African townships.
- My Life Beyond (7-9 years old): collaboration with patients and physicians from Mayo Clinic, to share the stories of children facing health challenges.
- Ensemble (all ages): shedding light on the daily lives of people and families living with rare diseases.
- Biotech Briefing: guides to help experts stay at the forefront of their fields, covering topics such as science communication and entrepreneurship.
The Fondation Ipsen leadership team
James A. Levine, M.D., Ph.D.
President
Celine Colombier-Maffre
Head of Publications
Florian Delval
Head of International Relations
Clea Stemitsiotis
Head of Innovation, Finance and Evaluation
Clémence Duffier
Head of Digital Communications