Science for People-Fondation Ipsen

What Science for People-Fondation Ipsen does

Fondation Ipsen is a French non-profit foundation operating under the aegis of Fondation de France, focused on rare disease awareness, education, and advocacy. Its mission is to accelerate early detection and care for the 400+ million people worldwide living with rare diseases by producing and distributing free educational content spanning multiple formats and audiences. The foundation's core technology is a digital publishing platform that delivers content in PDF, EPUB, Kindle, and printed formats via its website, partner school networks, public libraries, and digital retailers (Amazon Kindle, Fnac).

The product portfolio includes The Rare Disease Gazette (a monthly magazine co-produced with Science/AAAS), the Little Issue children's magazine (distributed free in schools in South Africa and Togo), a manga library (including a Paralympic trilogy with the French Paralympic Committee and the inclusive 'Un Autre Regard' on blind football), children's books ('Les Enfants de la Génétique'), poetry collections ('Rare Visions' with UCSF's Roopa Ramamoorthi), the semi-annual 'SoIn pour une Société Inclusive' journal, webinars, and documentary videos. Distribution is entirely free; revenue is not commercial and operates through grants, donations, and the implied backing of Ipsen, the pharmaceutical company. The foundation is led by President James A. Levine, MD, PhD.

Strategically, Fondation Ipsen pursues ecosystem and policy influence rather than commercial scale: it convenes webinars with Science magazine, participates in the World Orphan Drug Congress and World Health Assembly (WHA79), engages EURORDIS, Rare Diseases International, and the RDI Youth Leadership Programme, and amplifies named patient advocates (Yamina Hsaini, Pablo Ramirez Uribe, Shandra Trantham, Richard Horgan) across Instagram, YouTube, TikTok, and Facebook. Its core GTM is content marketing and partnership-driven distribution into underserved communities, schools, and libraries across France, South Africa, Togo, and the broader global rare disease community reached digitally.

Name

Science for People-Fondation Ipsen

Legal name

Fondation Ipsen

Website

https://fondation-ipsen.org

Company type

Private

Founded year

1983

Operating status

Operating

Headcount range

1–10 employees

Short description

Fondation Ipsen is a French non-profit foundation that produces and distributes free educational publications, manga, webinars, and documentaries to raise awareness and accelerate early diagnosis for the 400+ million people worldwide living with rare diseases, operating under the aegis of Fondation de France.

Ownership category

akta.pro rank

Product category

Rare Disease Education and Advocacy

NAICS

Information (51), Web Search Portals, Libraries, Archives, and Other Information Services (5192), Web Search Portals, Libraries, Archives, and Other Information Services (519)

SIC

Miscellaneous Publishing (2741), Periodicals: Publishing Or Publishing & Printing (2721)

akta.pro primary industry

Special Needs & Inclusive Learning Trade (Dyslexia, ADHD, ASD Supports) (EDAGAIAL)

akta.pro secondary industries

Digital Archives, Libraries & Institutional Access Platforms (MPAJAMAJ), Open Access Scholarly Journals & Monographs (EDAGAFAJ), E-book Subscription & Bundling Services (MPAJAMAB)

Keywords

• Rare disease education
• Disability awareness
• Health publications
• Patient advocacy resources
• Free educational content

Headquarters

HQ city

Boulogne-billancourt

HQ country

France

HQ region

Europe

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Foundation/Non-profit Operations: Fondation Ipsen operates as a foundation under the aegis of Fondation de France, supporting projects of general interest in science, education, disability and health. The foundation produces free educational content (books, webinars, videos) funded through grants and donations rather than commercial revenue.

Pricing tiers

Distribution channels4 records

Marketing channels9 records

Core offering

Fondation Ipsen is a nonprofit foundation under the aegis of Fondation de France that produces and freely distributes educational publications and digital media about rare diseases, disabilities, science, and inclusive health. Its portfolio includes monthly magazines (The Rare Disease Gazette with AAAS), children's magazines (Little Issue), manga trilogies, illustrated children's books, poetry collections, webinars with Science magazine, and documentary films, all distributed at no cost to patients, families, schools, and libraries worldwide.

Product overview

Fondation Ipsen is a rare disease foundation under the aegis of Fondation de France that produces educational publications and digital content to raise awareness about rare diseases. Its product portfolio consists primarily of free publications including The Rare Disease Gazette (a monthly magazine in collaboration with Science AAAS), the Little Issue children's magazine, the Manga Library (inclusive manga series), and Les Enfants de la Génétique children's books. Additional offerings include webinars, documentary videos, SoIn journal, and poetry collections. All materials are distributed free of charge in digital format, with printed versions distributed through partner networks of schools and libraries.

Differentiator

Problem solved

Functional benefit

Products and services

• The Rare Disease Gazette A monthly magazine produced in collaboration with Science magazine (AAAS), covering scientific news and discussions on rare disease detection, research, ethics, AI applications, and patient advocacy, aimed at the general public and the rare disease community.
• Little Issue A quarterly magazine for children that raises awareness of rare and genetic diseases and supports literacy, distributed free in schools in South Africa (English version, via Big Issue South Africa) and Togo (French version, via Association LIRE).
• Manga Library A collection of manga trilogies aimed at teenagers that raises awareness of scientific and societal issues, with each book a collaboration between a young mangaka and an expert, covering topics such as Paralympic sports, gender equality, digital addiction, and rare diseases.
• Les Enfants de la Génétique (Children of Genetics) Illustrated children's books that help young readers understand difference and diversity through stories featuring animals with genetic conditions, written in collaboration with medical professionals and associations.
• Un Autre Regard (Beyond Sight) An inclusive manga about Christopher Bourgeois, a visually impaired blind football (cécifoot) player, created in collaboration with Mangomics-Access and available in accessible formats (audio transcriptions and descriptions) for visually impaired and disabled readers.
• Webinars Educational webinars organized in partnership with Science magazine (AAAS), featuring scientists, patient advocates, and experts discussing rare disease topics, technology innovation, ethics, and community building.
• Documentary Videos Documentary films featuring stories of people living with rare diseases, such as 'Claude Revert: Still Standing' and 'Ida – Beyond the Stigma', showcasing patient advocacy journeys for awareness and education.
• SoIn pour une Société Inclusive A semi-annual journal exploring disability, inclusion, and societal diversity through articles, interviews, and artistic content, aimed at readers interested in inclusive society issues.
• Rare Visions A poetry collection written by people living with rare eye diseases, compiled by scientist and poet Roopa Ramamoorthi, featuring works that express experiences of vision loss with creativity and beauty.

Quantifiable outcome

• Free publications distributed to approximately 20,000 recipients through schools, handisport clubs, and Paralympic events
• +2 more outcomes

Named customers6 records

Segments1 record

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

15 partnerships are on record, tiered core and minor.

• Science Magazine (AAAS)coreStrategic or Co-development Partner · 1 January 2021Long-standing collaboration with Science magazine (American Association for the Advancement of Science) to deliver international science webinars for the general public. The partnership produces The Rare Disease Gazette magazine that broadcasts discussions on rare disease topics including detection, ethics, AI applications, and patient advocacy. The foundation's President James A. Levine contributes to introductions and forewords for publications.
• Comité Paralympique et Sportif Français (French Paralympic Committee)coreStrategic or Co-development PartnerCollaboration to produce the Paralympic Games manga trilogy featuring Paralympic athletes. The partnership has produced multiple titles including Jeux Paralympiques, Jeux d'été 2024, and individual athlete stories. Athletes including Renaud Clerc, Sonia Heckel, and Ryadh Sallem collaborated with manga artists to create educational content about parasports. The partnership has distributed approximately 20,000 manga copies to schools and handisport clubs.
• Mangomics-AccesscoreStrategic or Co-development PartnerAssociation that has worked for over ten years to make manga and comics accessible to people with visual impairments or disabilities on a non-profit basis. They provide audio transcriptions and descriptions of visual content, making the foundation's manga accessible to blind and visually impaired readers. The partnership produces inclusive manga like 'Un Autre Regard' featuring Christopher Bourgeois.
• Bonjour-France-JaponminorImplementation/ SI/ Consulting PartnerTeam of Japan enthusiasts and specialists providing courses on Japanese art, language, and civilization, as well as manga drawing workshops. Supports the production quality of manga publications through expertise in Japanese manga conventions.
• Rare Diseases InternationalcoreStrategic or Co-development PartnerMet at World Orphan Drug Congress 2025 to reaffirm shared commitment to advancing solutions for people living with rare diseases. Both organizations work toward improving lives of rare disease patients worldwide.
• MW Advocacy SolutionsminorGTM or Marketing PartnerMet at World Orphan Drug Congress 2025 to discuss collaboration opportunities in rare disease advocacy and stakeholder engagement.
• EURORDIScoreStrategic or Co-development PartnerPartnership supported the production of 'La Famille' manga trilogy about living with rare diseases, with EURORDIS Director Michael Wilbur providing endorsement. Yamina Hsaini received the EURORDIS Black Pearl Award 2025 for outstanding rare disease advocacy work.
• Access ElevateminorGTM or Marketing PartnerPanel participant at World Orphan Drug Congress 2025 discussing how to attract investment to rare disease startups, alongside foundation president.
• Curie Capital BVminorGTM or Marketing PartnerInvestment firm represented by Thom Frielink at WODC panel on attracting investment to rare disease startups.
• EQT Life SciencesminorGTM or Marketing PartnerInvestment firm represented by Kevin Hammon at WODC panel on attracting investment to rare disease startups.
• Fondation de FrancecoreStrategic or Co-development PartnerFondation Ipsen operates under the aegis of Fondation de France, providing institutional oversight and support for the foundation's activities in science, education, disability and health.
• UCSF (University of California, San Francisco)minorStrategic or Co-development PartnerRoopa Ramamoorthi, scientist and poet who directs the Catalyst program and Invent fund at UCSF, collaborated with the foundation on poetry publications including Rare Sounds and Rare Visions.
• ARGAD (Association de Recherche en Génétique et d'Accompagnement des familles et professionnels de Dijon-Bourgogne)minorStrategic or Co-development PartnerNon-profit association created in September 2010 supporting research in genetics and family/professional accompaniment in Burgundy. Collaborated on 'Noah, the Little Panda' children's book addressing Stargardt disease.
• Big Issue South AfricaminorChannel Partner/ Reseller/ DistributorPartnership for distribution of Little Issue magazine in South Africa, making the English version freely available in partner schools to support literacy and rare disease awareness.
• Association LIREminorChannel Partner/ Reseller/ DistributorAssociation facilitating distribution of French Little Issue magazine to schools in Togo, enabling free educational content access in underserved communities.

Scale indicators1 record

Recent moves6 records

Expansion highlights5 records

Direct peers

• Genetic Alliance: Nonprofit dedicated to transforming health through genetics, including rare disease advocacy and patient education. Comparable in mission, free content publishing, and partnership-driven distribution to patient communities.
• Orphanet: International reference portal for rare diseases and orphan drugs, providing encyclopedic content and patient resources. Comparable as a free, public-good information provider for the rare disease community with global reach.
• EveryLife Foundation for Rare Diseases: US-based rare disease advocacy nonprofit focused on policy and patient access. Comparable as a pharma-supported nonprofit producing educational content and engaging in policy advocacy for rare disease communities.
• EURORDIS - Rare Diseases Europe: European umbrella organization for rare disease patient advocacy and policy. Directly comparable as a rare-disease-focused nonprofit producing educational content, policy advocacy, and community programs; the foundation already collaborates with EURORDIS.
• NORD - National Organization for Rare Disorders: US-based rare disease advocacy organization producing patient education, webinars, and awareness content. Comparable in mission (rare disease awareness), funding model (nonprofit/pharma-supported), and content format (free publications and webinars).
• Rare Diseases International: Global alliance of rare disease patient organizations. Directly comparable mission and audience; the foundation explicitly partners with this organization.

Broad incumbents

• Wellcome Trust: Large global charitable foundation funding science, health, and education initiatives. Comparable in mission (science/health/education philanthropy) and free content publishing, though vastly larger in scale and scope.
• Fondation de France: Parent organization and one of France's largest philanthropic foundations. Comparable as a French nonprofit foundation umbrella under which Fondation Ipsen operates, with a much broader portfolio of causes beyond rare disease.

Others

• AAAS / Science Magazine: Scientific publisher and advocacy organization. Comparable as the foundation's core content partner for webinars and The Rare Disease Gazette; not a competitor but a publishing ally with overlapping scientific content expertise.

Regional players

• Comité Paralympique et Sportif Français: French Paralympic Committee, the foundation's core strategic partner for inclusive manga production. Comparable as a France-based organization producing disability-focused content; partner rather than competitor but adjacent in the inclusive content niche.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/@YaminaHsaini
• Facebookfacebook.com/yaminaslife
• Instagraminstagram.com/fondation.ipsen
• LinkedInlinkedin.com/company/fondation-ipsen

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Science for People-Fondation Ipsen