CNRHR FAHRES

What CNRHR FAHRES does

CNRHR FAHRES (Fédération d'Associations Handicap Rare et Épilepsie Sévère) is a French non-profit association governed by the loi 1901, established in 2013 as one of four National Resource Centers (CNRHR) under France's National Scheme for Rare Disabilities 2009-2013. It was formed through the union of two medico-social organizations — Institut La Teppe and the Office d'Hygiène Sociale (OHS) — and is headquartered in Tain l'Hermitage (Drôme). Its exclusive mandate is to serve as the national reference node for rare disabilities accompanied by severe epilepsy, operating within a tightly integrated network that includes the three other CNRHRs (CRESAM, La Pépinière, Robert Laplane), the GNCHR national coordination body, sixteen ERHR regional relay teams covering all French territories including overseas, and the CNDEE collective of nineteen specialized establishments.

The organization's product portfolio is built around knowledge dissemination rather than proprietary technology. Core offerings include a Documentation Centre with thematic collections and bibliographies; the Académie Fahres training platform delivering structured programs to medico-social establishments and family associations; two digital platforms — ComFAR, which equips ESMS to operationalize the resource function for epilepsy locally, and CoPower-Handicap, which hosts Communities of Practice (CoPs) Epilepsies et Handicap; and a research program anchored by the REPEHRES epidemiological study series (REPEHRES 1 through 5), which has produced unique prevalence data showing 13–18% epilepsy rates among ESMS residents across multiple French regions. Content services include monthly press reviews, thematic fact sheets, and webinars on topics such as epilepsy and sexuality, ketogenic diet, psychological suffering, and crisis management. The Dimpsy action-research project (2017) addressed additional psychological suffering in this population.

FAHRES operates a non-commercial, publicly funded business model: services are free to professionals, families, and persons with disabilities, with revenue flowing primarily through the CNSA (Caisse Nationale de Solidarité et d'Autonomie) under France's national rare-disability policy framework. Its primary customer segment is the French medico-social sector — ESMS establishments, specialized professionals, and patient/family associations. International linkages include ERN EpiCARE (European Reference Network on Rare and Complex Epilepsies), ILAE, IBE, and major French patient federations such as EFAPPE and Epilepsie France. The organization has approximately 11 employees and is led by Aymeric Audiau (Directeur de la publication), and its funding model makes it structurally dependent on continuity of French public disability policy.

Name

CNRHR FAHRES

Legal name

Fédération d'Associations Handicap Rare et Épilepsie Sévère (FAHRES)

Website

https://fahres.fr

Company type

Private

Founded year

2013

Operating status

Operating

Headcount range

11–50 employees

Short description

CNRHR FAHRES is a French non-profit national resource center dedicated to rare disabilities with severe epilepsy, providing documentation, training, epidemiological research, and community platforms to medico-social professionals, families, and persons with disabilities across France.

Ownership category

akta.pro rank

Product category

Medico-Social Resource Services for Rare Disabilities

NAICS

Services for the Elderly and Persons with Disabilities (624120), Educational Support Services (611710)

SIC

Services-Educational Services (8200)

akta.pro primary industry

Special Education Due Process, Mediation & Dispute Resolution Support (EDAKACAH)

Keywords

• Rare disability resources
• Severe epilepsy support
• Medico-social services
• Professional training healthcare
• Epidemiological research services

Headquarters

HQ city

Tain l'Hermitage

HQ country

France

HQ region

Europe

Offices18 records

Markets served

GTM type

B2B

Offering type

Services

Cost components

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

Distribution channels1 record

Marketing channels8 records

Core offering

FAHRES is a French national resource center that provides free expertise, documentation, training, research, and community coordination services to medico-social establishments, professionals, and families dealing with rare disabilities combined with severe epilepsy. It operates a Documentation Centre, the Académie FAHRES training program, the ComFAR and CoPower-Handicap digital platforms, and conducts epidemiological research (REPEHRES) and action-research (Dimpsy, NEXTHEP) projects. Services are delivered free of charge and publicly funded through the French national disability policy framework.

Product overview

FAHRES operates as a national resource center for rare disabilities with severe epilepsy component, providing a unified portfolio of interconnected services. The core offerings include a Documentation Centre offering thematic collections, bibliographies, and publications; Académie Fahres delivering specialized training in rare disability and epilepsy; and research initiatives including REPEHRES epidemiological studies and the Dimpsy action-research project. These are supported by digital platforms ComFAR (for resource function deployment) and CoPower-Handicap (for Communities of Practice), along with content services including press reviews, thematic fact sheets, and webinars. The organization functions as a public interest resource rather than a commercial technology product.

Differentiator

Problem solved

Functional benefit

Brands

• Académie Fahres: Formation academy within FAHRES that designs and supports training actions for establishments and family associations in the field of rare disability and epilepsy.

Products and services

• Centre de documentation - Documentation Centre A comprehensive resource centre providing access to thematic collections, bibliographies, press reviews, publications, and research documents on rare disabilities and severe epilepsy, for professionals, families, and persons with disabilities.
• Académie Fahres - Training Academy A learning organization that designs, supports, and delivers training actions for medico-social establishments and family associations working in the field of rare disability and epilepsy, focusing on collective intelligence and collaborative approaches.
• ComFAR Resource Function Platform An online platform developed to support medico-social establishments (ESMS) in deploying resource functions, providing tools and methodology for territorial expertise in epilepsy.
• CoPower-Handicap - Communities of Practice Platform A community of practice platform connecting professionals, families, and caregivers across regions (Pays de la Loire, Bretagne, Nord-Est) to share knowledge and experiences on epilepsy and disability.
• REPEHRES Epidemiological Studies Epidemiological studies (Recensement des Populations En situation d'Handicaps Rares et Epilepsies Sévères en ESMS) conducted across multiple French regions to identify and count persons with epilepsy in medico-social establishments.
• Dimpsy - Action Research on Psychological Suffering Action-research study focused on identifying and preventing additional psychological suffering in persons with rare disabilities and severe epilepsy through interpersonal approach on life stories.
• Webinaires FAHRES - Webinars Educational webinars produced by FAHRES covering topics such as epilepsy and sexuality, physical activity, psychology, seizures, ketogenic diet, and related themes for professionals and families.
• Revues de presse - Press Reviews Service Monthly press reviews providing an overview of the latest news on epilepsy and broader disability/rare disease topics, distributed via email subscription.

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

17 partnerships are on record, tiered core and major.

• GNCHR - Groupement National de Coopération Handicap RarecoreStrategic or Co-development PartnerNational coordination body for the rare disabilities network. GNCHR brings together the four National Resource Centers (CNRHR) and regional relay teams (ERHR) to ensure coherent national coverage and knowledge sharing in the rare disability sector.
• CNRHR CRESAMcoreStrategic or Co-development PartnerNational Resource Center for Deaf-Blindness (Surdicécité). Cooperates with FAHRES within the GNCHR network to share expertise and develop collaborative resources for rare disability situations.
• CNRHR La PépinièrecoreStrategic or Co-development PartnerNational Resource Center for Visual Disabilities with Associated Disorders. Cooperates within the rare disabilities network, contributing to the national strategy for rare disability knowledge sharing.
• CNRHR Robert LaplanecoreStrategic or Co-development PartnerNational Resource Center for Hearing Disabilities with Associated Disorders and Complex Language Disorders. Cooperates within the GNCHR rare disabilities network structure.
• ERHR - Equipes Relais Handicaps Rares (16 regional teams)coreStrategic or Co-development Partner16 Regional Relay Teams covering all French territories (Auvergne Rhône-Alpes, Bretagne, Centre-Val de Loire, Île-de-France, Occitanie Est, Occitanie Ouest, Nord-Est, Nord-Ouest, Nouvelle Aquitaine, Pays de la Loire, Provence Alpes Côte d'Azur-Corse, Réunion-Mayotte, Antilles-Guyane). These teams animate Communities of Practice and provide territorial coverage for rare disability expertise.
• CNDEE - Collectif National des Etablissements et services EpilepsiescoreStrategic or Co-development PartnerNational collective of 19 specialized healthcare and medico-social establishments dedicated to epilepsy. CNDEE animates interdisciplinary exchanges, conducts comparative studies, promotes research, and cooperates with the national rare disabilities scheme and FAHRES.
• EFAPPE - EpilepsiescoreStrategic or Co-development PartnerNational federation of associations for persons with severe epilepsy (pharmaco-resistant). EFAPPE brings together patient associations and represents families' interests in the epilepsy care ecosystem.
• Institut La TeppecoreStrategic or Co-development PartnerFounding institution of FAHRES. Medical establishment providing specialized care for persons with epilepsy and rare disabilities. The institution hosts FAHRES headquarters and serves as a practical foundation for expertise development.
• OHS - Office d'Hygiène Sociale de Meurthe et MosellecoreStrategic or Co-development PartnerSecond founding institution of FAHRES. Public hygiene and social service office contributing to the medico-social expertise base that informed FAHRES creation.
• CNSA - Caisse Nationale de Solidarité et d'AutonomiecoreOthersNational fund for solidarity and autonomy supporting the rare disability sector. CNSA contributes to financing and policy development for disability services, including FAHRES publications and guides.
• ERN EpiCARE - European Reference Network on Rare and Complex EpilepsiesmajorStrategic or Co-development PartnerEuropean Reference Network created in 2017 to improve care for rare and complex epilepsies and reduce inequalities in access to diagnostic and therapeutic practices. EpiCARE connects over 900 highly specialized care teams across Europe.
• ILAE - International League Against EpilepsymajorStrategic or Co-development PartnerGlobal professional organization dedicated to epilepsy research, education, and care. ILAE works to ensure that healthcare professionals, patients, caregivers, governments, and the public have access to essential educational and research resources.
• IBE - International Bureau for EpilepsymajorStrategic or Co-development PartnerInternational organization improving social conditions and quality of life for persons with epilepsy and their caregivers. IBE addresses social issues including education, employment, insurance, driving restrictions, and public awareness.
• ERHR Nord-EstcoreStrategic or Co-development PartnerRegional Relay Team for North-East France (covering Alsace, Bourgogne-Franche-Comté, Lorraine, and Champagne-Ardenne). Conducted REPEHRES 4 study applying FAHRES methodology on their territory in collaboration with FAHRES.
• ERHR Réunion-MayottecoreStrategic or Co-development PartnerRegional Relay Team for Réunion and Mayotte. Partnered with FAHRES, ARS Réunion, hospitals (ASFA, CHOR, CHU), and patient associations for REPEHRES 5 study on the island.
• Epilepsie FrancemajorStrategic or Co-development PartnerNational patient association bringing together epileptic persons and their relatives, professionals, and other associations. Federates activities at national level and provides support for persons with epilepsy.
• FFRE - Fondation Française pour la Recherche sur l'EpilepsiemajorStrategic or Co-development PartnerPublic utility foundation authorized to receive donations and legacies. FFRE finances epilepsy research projects, informs patients, supports families, and advocates for better epilepsy care with public authorities.

Scale indicators8 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• CNRHR Robert Laplane: French National Resource Center for Hearing Disabilities with Associated Disorders and Complex Language Disorders. Fourth CNRHR in the GNCHR network, structurally identical to FAHRES in mission and operating model.
• GNCHR - Groupement National de Coopération Handicap Rare: National coordination body for the four CNRHRs and regional relay teams. Directly comparable to FAHRES as the convener of the network in which FAHRES operates, sharing the same public-interest, publicly-funded mandate.
• CNRHR CRESAM: French National Resource Center for Deaf-Blindness (Sourdicécité) and direct FAHRES counterpart within the GNCHR network. Operates the same statutory mandate model for a different rare-disability population, making it the closest structural peer.
• CNRHR La Pépinière: French National Resource Center for Visual Disabilities with Associated Disorders. Sister CNRHR to FAHRES under the same national strategy, delivering parallel documentation, training, and resource-function services to a different disability cohort.

Broad incumbents

• ERN EpiCARE: European Reference Network for Rare and Complex Epilepsies connecting 900+ specialized care teams. FAHRES is a partner; EpiCARE operates at broader European scale with overlapping focus on rare and complex epilepsy expertise.
• International League Against Epilepsy (ILAE): Global professional organization for epilepsy research, education, and care. Compares to FAHRES in its mission to disseminate epilepsy expertise and resources, but operates at worldwide scale rather than national medico-social scope.
• International Bureau for Epilepsy (IBE): International organization addressing social conditions and quality of life for persons with epilepsy. Shares FAHRES's focus on the social and accompaniment dimensions of severe epilepsy, with a global footprint.

Others

• Epilepsie France: National patient association federating persons with epilepsy, families, and professionals. Comparable to FAHRES in its national reach and stakeholder role across the French epilepsy ecosystem, but focused on association-level advocacy rather than medico-social resource function.
• Fondation Française pour la Recherche sur l'Epilepsie (FFRE): Public utility foundation funding epilepsy research and supporting families. Comparable to FAHRES as a publicly minded epilepsy organization, though oriented toward research funding rather than resource-center and training services.
• EFAPPE - Epilepsies: National federation of associations for persons with pharmaco-resistant severe epilepsy. Adjacent to FAHRES as a member of the same ecosystem; represents the family/patient perspective that complements FAHRES's professional expertise mandate.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat6 records

Key risks5 records

Key highlights6 records

Customer concentration

• LinkedInlinkedin.com/company/fahres

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 CNRHR FAHRES