Fondation Française pour la Recherche sur l'Epilepsie

What Fondation Française pour la Recherche sur l'Epilepsie does

The Fondation Française pour la Recherche sur l'Epilepsie (FFRE) is a French non-profit foundation of full exercise ("fondation de plein exercice"), recognized as being of public utility ("reconnue d'utilité publique") since its creation in 1991 by Bernard Esambert. It is the only French foundation exclusively dedicated to epilepsy research, and operates a portfolio of three core service lines: (1) competitive research funding distributed through annual calls for projects ("appels à projets") with grants ranging from €10,000 to €290,000 and a dedicated 2026 allocation of €170,000, reviewed by a 16-member Scientific Council; (2) patient and family support via a telephone/email helpline, educational publications, and advocacy for inclusion; and (3) public awareness campaigns including Purple Day France (March 26), public colloquia, webinars, and the #EpilepsyPledge initiative. It also operates a small e-commerce boutique selling educational books (€8–€28) and Purple Day merchandise (€2–€18).

The foundation is funded primarily by individual donations (a majority from patients and their families), legacies, charitable events (annual dinner), and IFI tax-reducible contributions processed via the iRaiser donation platform. It coordinates the Task Force Epilepsie, a national coalition created in 2015 uniting the Ligue Française contre l'Epilepsie, Société Française de Neurologie, Société Française de Neuropédiatrie, Fédération Française de Neurologie, and patient associations within the Comité National pour l'Epilepsie. It is registered with the CNIL (1677136) and headquartered at Hôpital Necker Enfants Malades (registered office) with a mailing address at 4 rue Paul Besnard, Issy-Les-Moulineaux. Its technology stack is non-proprietary (OVH hosting, iRaiser fundraising platform, Expression Groupe agency for digital), with no AI/ML components — the foundation is not a technology entity but a research-funding and patient-advocacy intermediary. The organization is governed by a Board of Directors and a Scientific Council, and operates with approximately 8 staff and a network of regional volunteers.

Name

Fondation Française pour la Recherche sur l'Epilepsie

Legal name

Fondation Française pour la Recherche sur l'Épilepsie

Website

https://fondation-epilepsie.fr

Company type

Private

Founded year

1991

Operating status

Operating

Headcount range

1–10 employees

Short description

The FFRE is a French public-utility foundation founded in 1991 and the only organization exclusively dedicated to funding epilepsy research in France. It awards competitive grants (€10K–€290K) reviewed by a 16-member Scientific Council, supports patients and families, and coordinates the national Task Force Epilepsie coalition.

Ownership category

akta.pro rank

Product category

Nonprofit Health Foundation

NAICS

Voluntary Health Organizations (813212), Grantmaking and Giving Services (81321)

SIC

Services-Social Services (8300)

akta.pro industry

PRIMARYBPAGACAA

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS)

Business & Public Services/Nonprofit, NGO & Social Services/Health & Medical Nonprofits

SECONDARYHLAJALAF

Community Health & Prevention Program Funding

Healthcare & Life Sciences/Public Health, Government & Regulators/Public Health Funding, Grants & Program Administration

Keywords

• Epilepsy research funding
• Patient support services
• Medical research foundation
• Disease awareness campaigns
• Philanthropic fundraising

Headquarters

HQ city

Issy-Les-Moulineaux

HQ country

France

HQ region

Europe

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Individual donations and legacies: The FFRE operates primarily on donations from individuals, the majority of whom are patients and their families. The foundation also receives legacies and donations (legs or donations) from both private individuals and companies, and is habilitated to receive such funds as a recognized public utility foundation.
2. Charitable events: Annual charity dinner events generate fundraising revenue from corporate and individual supporters attending the events.
3. Merchandise sales: The FFRE operates a boutique selling Purple Day merchandise (bracelets, ribbons, clothing, books, plush toys) and educational publications. Prices range from €2 for a bracelet to €28 for books.

Pricing tiers

Go-to-market motion1 record

Distribution channels4 records

Marketing channels10 records

Core offering

The FFRE is a non-profit public utility foundation that funds epilepsy research through competitive annual calls for projects (€10,000–€290,000 per project), supports patients and families via a telephone and email helpline, runs public awareness campaigns (notably Purple Day France on 26 March), and advocates with public authorities through the Task Force Epilepsie coalition. It also sells educational publications and Purple Day merchandise through an online boutique to generate supplementary fundraising revenue.

Product overview

The Fondation Française pour la Recherche sur l'Epilepsie (FFRE) is a public utility foundation established in 1991 that operates as a charitable organization rather than a technology company. Its offerings include research funding programs (annual calls for projects with €10,000-€290,000 grants, the Valérie Chamaillard Prize of €30,000-€50,000), patient support services (telephone/email helpline, information dissemination), public advocacy initiatives, and awareness campaigns. The foundation maintains an online boutique selling educational publications about epilepsy (books ranging from €8-€28) and merchandise supporting Purple Day awareness activities (bracelets, caps, bags, t-shirts, badges, keychains priced €2-€18). Communication services include a regular newsletter and events such as public colloquia and meetups. The core offering is not a software product but rather a portfolio of research funding, patient support, and awareness services.

Differentiator

Problem solved

Functional benefit

Products and services

• 100 questions/réponses pour mieux comprendre l'épilepsie Educational book providing 100 questions and answers to better understand epilepsy, aimed at patients and families.
• Les épilepsies, parlons-en ! Educational publication about epilepsy for patients and families.
• Bien vivre son épilepsie Guide for living well with epilepsy.
• Travailler avec l'épilepsie Publication addressing epilepsy in the workplace context.
• L'épilepsie chez l'enfant – Conseils de vie au quotidien Book offering practical advice for daily life with epilepsy in children.
• De l'ombre à la lumière, et ma vie s'éclaire Testimony book about epilepsy.
• Comment vivre avec une personne atteinte d'épilepsie Guide for family members and caregivers living with someone with epilepsy.
• Que sais-je ? – L'Épilepsie Academic reference book providing comprehensive knowledge about epilepsy.
• Purple Day Merchandise (bracelets, caps, bags, t-shirts, plush toys, badges, keychains, masks, ribbons, water bottles) Consolidated merchandise line for Purple Day epilepsy awareness (26 March), including bracelets (€2/€6 pack), caps (€8), tote bags (€8), t-shirts (€18), Super Epsilone plush toys (€10), badges (€3), keychains (€4), fabric masks (€5), ribbons (€2), and water bottles (€10). Prices include shipping.
• Appels à Projets de Recherche (Research Funding Program) Annual competitive funding program for epilepsy research projects, with amounts ranging from €10,000 to €290,000 per project. Projects are reviewed by the foundation's 16-member Scientific Council.
• Soutien aux Patients et Familles (Patient and Family Support Service) Support services for patients and families including telephone and email helpline, orientation, and information dissemination about epilepsy.
• Recherche de Financement pour la Recherche (Research Funding Promotion) Financial support and promotion of epilepsy research through grants for original research projects submitted by epileptologists and researchers.
• Actions de Communication et Sensibilisation (Awareness Campaigns) Communication campaigns including events (concerts, dinners), distribution of documentation, publications, and surveys to combat misconceptions about epilepsy.
• Coordination avec les Pouvoirs Publics (Public Authority Advocacy) Lobbying and coordination with public authorities for better epilepsy care, including participation in Task Force Epilepsie.
• Purple Day France Annual international epilepsy awareness day held on March 26, coordinated by FFRE in France, promoting epilepsy awareness and fundraising.
• Newsletter FFRE Regular newsletter published several times per year covering epilepsy research updates and foundation news, available by email or postal mail.
• Prix Valérie Chamaillard Annual research prize of €30,000 to €50,000 awarded in partnership with Fondation de France for outstanding epilepsy research, co-funded since 2000.
• Bourses de Recherche FFRE Research grants of €15,000 for young researchers and various project-specific funding for epilepsy research.

Quantifiable outcome

• 700,000 patients in France affected by epilepsy; 200,000 resistant to all treatments; 3,500 deaths per year due to inadequate care
• +1 more outcomes

Named customers2 records

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

16 partnerships are on record, tiered minor and core.

• Alexandre de la Forest Divonne (commissaire-priseur)minorOthers · 28 March 2019Auctioneer for the FFRE's annual charity dinner events, facilitating fundraising through art and merchandise auctions.
• Lion's Club Paris Necker PasteurminorGTM or Marketing PartnerOrganized a dinner benefiting the FFRE, which provided the occasion to meet supporting personalities such as writer Didier Van Cauwelaert.
• Didier Van Cauwelaert (writer)minorOthersPrix Goncourt-winning writer and science popularizer who supports the FFRE and has published works related to consciousness and epilepsy.
• Nicole Gaulier (artist painter)minorOthersRenowned painter who donated canvases to the FFRE, which were auctioned at charity events in 2014, 2015, and 2016.
• Comité National pour l'Epilepsie (CNE)coreStrategic or Co-development PartnerThe FFRE acts within the CNE, which brings together all organizations working on epilepsy. The CNE coordinates advocacy efforts toward public authorities for better recognition and care of epilepsy patients.
• Ligue Française contre l'Epilepsie (LFCE)coreStrategic or Co-development PartnerThe LFCE (neurologists/epileptologists' society) works alongside the FFRE in the Task Force Epilepsie and in the Réseau Sentinelle Mortalité Epilepsie for monitoring epilepsy-related mortality.
• Société Française de Neurologie (SFN)coreStrategic or Co-development PartnerPartner in the Task Force Epilepsie, contributing to advocacy for better epilepsy care pathways and healthcare organization.
• Société Française de Neuropédiatrie (SFN-P)coreStrategic or Co-development PartnerPartner in the Task Force Epilepsie, focusing on pediatric epilepsy care pathways and school inclusion for children with epilepsy.
• Fédération Française de Neurologie (FFN)coreStrategic or Co-development PartnerPartner in the Task Force Epilepsie, participating in efforts to improve epilepsy care organization and public health policy.
• ODOXAminorStrategic or Co-development PartnerFFRE conducted a survey with ODOXA on public knowledge and perceptions of epilepsy in France to support awareness-raising campaigns.
• Réseau Sentinelle Mortalité Epilepsie (RSME)coreStrategic or Co-development PartnerNational mortality surveillance network created in 2010 with FFRE and LFCE support, coordinating the PRERIES study on SUDEP risk factors. Involves hospitals across France including CHU Montpellier, Rennes, Lille, Lyon, Nancy, Marseille, and Paris.
• Education Nationale (French Ministry of Education)coreOthersPartnered with the FFRE to produce 'Accueillir et accompagner un élève atteint d'épilepsie', a guide for teachers distributed to all French schools to improve inclusion of children with epilepsy.
• iRaisercoreTechnology or IntegrationTechnology partner providing the online fundraising and donation platform infrastructure for the FFRE's website, handling donations, IFI contributions, and event registrations.
• OVHcoreTechnology or IntegrationWeb hosting provider for the FFRE website (www.fondation-epilepsie.fr), cited in the privacy policy as the data hosting and security provider alongside iRaiser.
• Expression Groupe (agency)minorOthersCreative agency credited for website design, development, and content production for the FFRE digital presence.
• Stéphanie Bataille (comedian, writer, director of Théâtre Antoine)minorOthersCelebrity supporter who publicly endorses the FFRE's mission to fight epilepsy and promote research.

Scale indicators4 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• International Bureau for Epilepsy (IBE): An umbrella organization of national epilepsy patient associations across more than 100 countries. It operates in the same disease space, focused on patient advocacy and awareness—comparable to FFRE's patient support and public-facing missions at a global level.
• Ligue Française contre l'Epilepsie: The French professional society of epileptologists and neurologists, partnering with FFRE in the Task Force Epilepsie and the Réseau Sentinelle Mortalité Epilepsie. It addresses the same disease and patient community in France from a clinical/professional angle rather than a research-funding angle.
• Epilepsy Society: The UK national charity for epilepsy, combining research funding, patient services, and awareness campaigning. It mirrors FFRE's integrated model of funding research while supporting patients, though at a larger scale and in the UK context.
• Epilepsy Foundation: The largest US-based nonprofit dedicated to epilepsy, offering patient support, research funding, and public awareness. It is a directly analogous disease-specific foundation serving a similar mission and beneficiary population in a different geography.

Broad incumbents

• Fondation ARC pour la Recherche sur le Cancer: A French cancer-specific research foundation with a comparable grantmaking model and donor base. It demonstrates the disease-specific foundation template FFRE operates within, while competing for charitable mindshare.
• Fondation de France: France's largest philanthropic umbrella organization, co-funding the Prix Valérie Chamaillard with FFRE since 2000. It is both a partner and a structural model for FFRE's grantmaking and public utility foundation status.
• AFM-Téléthon: France's flagship disease-specific research foundation for neuromuscular disorders, running the annual Téléthon fundraiser. It shares FFRE's disease-specific fundraising and research-grant model but at vastly greater scale and visibility.
• Ligue Nationale contre le Cancer: France's leading cancer charity combining research funding, patient support, and advocacy. As a much larger and better-known French health nonprofit, it competes with FFRE for individual and corporate donations.
• Fondation pour la Recherche Médicale (FRM): France's largest private funder of medical research across all diseases. It competes with FFRE for both donor mindshare and researcher grant applications, while not specializing in neurology or epilepsy.

Regional players

• Fédération Française de Neurologie (FFN): The umbrella federation for French neurology societies, a core Task Force Epilepsie partner. While not focused solely on epilepsy, it shapes French neurology policy alongside FFRE.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/watch?v=gU18vqPY3QE&ab_channel=FondationFran%C3%A7aisepourlaRecherchesurl%27Epilepsie
• LinkedInlinkedin.com/company/fondation-fran-aise-pour-la-recherche-sur-l'epilepsie

Revenue estimate

Valuation estimate

Number of profiles

Profiles4 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Fondation Française pour la Recherche sur l'Epilepsie