Our initiatives
We are committed to improving rare disease detection, fostering innovation, and promoting well-being for people living with a rare disease. Learn about our initiatives:
WE LEARN
By integrating insights from both patients and experts, we ensure our initiatives are grounded in real-world experiences and cutting-edge research.
From Patients and Families
Listening to patients and their families is vital for understanding the unique challenges faced by those impacted by rare diseases. By prioritizing these voices, we ensure our initiatives are impactful and tailored to meet the needs of the rare disease community.
Needs Assessment: we conducted interviews with 45 rare disease patient organizations across the U.S. and Europe to explore the financial impact for caregivers of children with rare diseases. The report will cover the impact of being a caregiver on work and school, the insurance and out of pocket costs, and the impact on quality of life.
From Experts
By collaborating with rare disease experts around the world , we ensure that our efforts are grounded in the latest scientific research and clinical expertise. Insights from professionals, including researchers, healthcare providers, and policy expert guide our initiatives, inform best practices, and drive innovation in diagnosis and treatment
Webinars with Science/AAAS: bimonthly webinars about rare diseases bring together leading authorities in the field and rare patient voices.. The full webinars are available for free and transcripts are edited and published under the name “Rare Disease Gazette”.
Rare Disease Conversations with Children’s National Rare Disease Institute: grand rounds featuring prominent figures in the field, such as Pr. Marshall Summar and Dr. Debra Regier, who discussed advancements in care and education related to rare diseases.
WE DO
Through our focus on collaboration and innovation, we ensure that our projects create a durable and meaningful impact on the lives of individuals affected by rare diseases.
Collaborate to Better Advocate
Rare Disease Day: we promote the globally coordinated movement Rare Disease Day by EURORDIS in underserved regions by supporting newly-joined national alliances in 25 countries to launch their own initiatives
European Health Data Space: we advocate with EURORDIS for rare disease patients in the European Health Data Space agreement
Fondation de France Working Group: established to unite Foundations addressing rare diseases, this group focuses on sharing expertise, avoiding project duplication, and raising awareness.
Mini Grants: 51 mini grants were awarded to support high impact projects (ARSLA Short Story Competition, Mangomics Access for more accessible mangas…)
Champion Inclusivity
We are dedicated to advancing inclusivity and raising awareness about disabilities. By fostering projects that highlight diverse experiences and promote accurate representation, we aim to break down barriers and challenge stereotypes.
Young Caregivers Respite Stay: we support Jeunes Aidants Ensemble JADE in organizing an interregional stay for young caregivers to benefit from a summer break and meet peers.
Jaccéde: we support CAPSAA in building a platform providing free information on the accessibility levels of public places.
Para-athlete: we support Anne Claveau, a double French Handbike Champion that lives with a rare disease and organizes awareness activities and events.
Court Devant Film Festival: we support the collaboration between artists and individuals living with disabilities to make short movies on disability and sports.
SoIn: we distribue SoIn for an Inclusive Society newspaper in the streets of Paris.
Innovate in the Rare Disease Space
We foster innovation by promoting novel approaches in addressing unmet needs within the rare disease community, such as the lack of funding and investment in the rare disease space. Some of our actions include:
International Symposia:
• UCSF: Innovation on diagnostics
• LaunchBio: Venture Philanthropy
• WODC: Panel and collaboration
• European Rare Diseases Research Alliance
Book:
WE TEACH
To raise awareness on rare disease, we produce books and digital content that educate diverse audiences, share patient stories, and provide expert insights..
Publish Books for All: Fondation Ipsen BookLab
Through collaborations between experts, artists, authors and children, our publications span all age groups and are available in multiple languages. Our work is centered on education and awareness of topics pertaining to health, disability and 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 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.
Publish Books for Professionals: Fondation Ipsen Press
Founded in 2024, Fondation Ipsen Press focuses on publishing practical and accessible guides, mainly for professionals and investors. The goal is to provide concise, engaging books on essential scientific and technical topics for a specialized audience.
Some key book series:
Biotech Briefings: this series of guides targets industry professionals, covering topics such as “Scientific Communication” and “Entrepreneurs have the DACMAR Advantage.” The aim is to bridge technical knowledge with actionable insights, helping experts and stakeholders stay ahead in their fields.
National Academies of Sciences: this collection, available in French, compiles reports from the U.S. National Academies of Sciences, addressing societal issues like the role of women in science, inclusion, and philanthropy as a model for funding research
Train International Journalists
Rare diseases are often underrepresented in the media, leaving patients and families without accurate portrayals. To encourages the coverage of the range of complex medical issues pertaining to rare disease in the media, our partnership with the National Press Foundation trains 25 journalists from 21 countries every year to report on rare diseases. Selected from 409 applicants, they received guidance from world experts in the field
Their work has resulted in 48 articles in print, radio and TV, broadcast by major outlets (National Geographic, Talk Africa, Today, the Indian Express…), reaching a potential audience of 522 million people—bringing vital attention to the rare disease community worldwide.
Spread Awareness Using Digital Media
To effectively raise awareness on rare diseases and improve health literacy, Fondation Ipsen leverages digital platforms to amplify patient voices, share evidence-based health information, and promote its activities to a wide and diverse audience. By effectively utilizing social media platforms and its website, the Foundation can enhance public knowledge and support for rare diseases, driving meaningful change.
Our three editorial pillars:
– Amplify the voice to the patient community with rare disease patient stories
– Deliver reliable science content from experts
– Promote our activities to support Fondation Ipsen ’s position in advocacy
Our channels:
– Social media
– Podcasts
