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, supports initiatives in healthcare, research, and education. The Foundation focuses on advancing the needs of people living with rare diseases, improving patient care, and promoting social and educational projects to enhance well-being in the rare disease community and foster innovation.
In order to reach these ambitious goals, Fondation Ipsen’s strategy focuses on:
- Catalyzing collaborations to advance science and support patients: actively engaging with leading research institutions, healthcare providers, and patient advocacy groups.
- Raising awareness about rare disease through the publication of books: producing and distributing free of charge, high-quality publications to increase public and professional knowledge about rare diseases, and to improve detection, support, and advocacy.
- Enhancing Entrepreneurship in Rare Disease: fostering innovation to create solutions for rare disease challenges.
The Foundation’s management principles emphasize transparency, independence, and ethical standards, ensuring that all activities are conducted with the utmost integrity.
Catalyzing collaborations to advance science and support patients
Collaborative partnerships are at the core of the Foundation’s strategy, actively engaging with leading research experts, healthcare institutions, and patient advocacy groups. These alliances are established around shared goals and a mutual commitment to advancing rare disease initiatives. Transparency, clear communication, and accountability are paramount in partnerships, ensuring synergy and collective impact in achieving the Foundation’s mission. The Foundation facilitates group discussions and collaborative efforts, actively seeking opportunities to synergize projects with partners.
Some collaborative projects include:
- Partnering with the journal Science and delivering webinars, giving a voice to international rare disease patients and experts, impacting 800,000 people per episode.
- Partnering with Eurordis to support the international Rare Disease Day campaign, a globally coordinated movement to improve awareness of rare disease among the general public.
- Creating a unique alliance made up of other French foundations to strengthen their impact and promote the development of therapeutic solutions accessible to all with European and French authorities.
- Supporting the OECD to work on artificial intelligence (AI) and the productivity of science. One aim of the project was to update and significantly expand previous work on AI in science, conducted under the aegis of the Committee on Scientific and Technological Policy (CSTP).
Raising awareness about rare disease through the publication of books
Through initiatives of Fondation Ipsen BookLab and Fondation Ipsen Press, the Foundation produces and distributes high-quality publications aimed at educating diverse audiences about rare diseases. These books are distributed free of charge to the public in print and digital formats, ensuring equitable access to valuable information around the world.
Some publication projects include:
- Increasing Public Awareness: educating the general public about rare diseases to improve detection and support. “Little Issue”, a quarterly science and educative magazine for 6–9-year-old children is distributed for free in underserved communities and schools.
- Supporting Experts: providing comprehensive resources to professionals in the field of rare diseases. A digital dictionary has been developed by the Center of Reference for Clefts and Facial Malformations (MAFACE). It includes over 300 definitions of medical and paramedical terms used in the treatment and follow-up of patients born with a cleft lip and palate.
- Strengthening Partnerships: consolidating collaborations with over 30 organizations worldwide. In collaboration with the Mayo Clinic, Fondation Ipsen publishes a series of illustrated children’s books on rare diseases.
By partnering with libraries, educational institutions, and healthcare providers, the Foundation enhances accessibility and promotes widespread understanding of rare diseases, empowering individuals with knowledge to advocate for better care and support.
Enhancing Entrepreneurship in Rare Disease
Innovation and sustainability are core principles guiding the Foundation’s projects. The Foundation fosters innovation by promoting novel approaches in raising awareness and addressing unmet needs within the rare disease community. Optimizing resource allocation and operational efficiency maximizes the long-term impact and scalability of initiatives, ensuring enduring benefits for individuals living with rare diseases.
Some entreprenarial projects include:
- Partnering with UCSF to develop an interdisciplinary online symposium on innovation in rare diseases. This program connected patients to Biotech, and support international collaborations. The initiative reached an audience of over 10 million viewers.
- Partnering with LaunchBio to connect international researchers and entrepreneurs with foundations and potential investors to develop innovative approaches to supporting and funding translational research and therapies.
Through its focus on innovation and sustainability, Fondation Ipsen ensures that its projects create a durable and meaningful impact on the lives of individuals affected by rare diseases.
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