Fondation EDMUS contre la sclérose en plaques

What Fondation EDMUS contre la sclérose en plaques does

Fondation EDMUS contre la sclérose en plaques is a French public utility foundation (Fondation reconnue d'utilité publique), established on April 19, 2010, by Professor Christian Confavreux. Its mission is to accelerate multiple sclerosis (MS) research by understanding the disease's impact on patients' lives and improving their care pathways, operating under principles of neutrality, independence, and scientific objectivity. The foundation is headquartered in Bron, Auvergne-Rhône-Alpes, co-located with the Hospices Civils de Lyon neurology service, and operates with a small staff of five under the leadership of General Director Lucie Bellon Tabart and Board President Professor Thibault Moreau (since December 2023).

The foundation's core product is the EDMUS Platform, a national, secure IT platform that evolved from the original EDMUS software developed in 1990. It operates as a dual platform: a care component providing shared medical specialty records for daily neurological patient management, and a research component centralizing patient data for clinical research. The foundation manages the OFSEP (Observatoire Français de la Sclérose En Plaques), a national MS cohort comprising 84,244 patients as of 2025 with longitudinal clinical, biological, MRI, and SNDS data, supplemented by a high-definition sub-cohort of 2,842 patients with annual systematic follow-up. OFSEP is operated through the foundation's wholly-owned subsidiary, EDMUS Services s.a.s., and is federated internationally with MS registries in Italy, Denmark, Sweden, the Czech Republic, and Australia via the Big MS Data network.

The foundation's revenue model is non-commercial and donation-driven rather than transactional. It generates income through individual donations and legacies (qualifying for 66% income tax reduction or 75% IFI reduction), corporate patronage under the "Comprendre pour Agir" campaign (60% corporate tax reduction), and grant disbursements. It co-funds research projects with Fondation France Sclérose En Plaques at up to €100,000 per project (30 projects totaling €2,320,971 over 2016–2025), and co-leads the Chaire INSPIRE interdisciplinary research program with EHESP. The EDMUS platform itself is provided free of charge to the medical and scientific community, serving 400 neurologists, radiologists, and biologists across 45 OFSEP centers.

Name

Fondation EDMUS contre la sclérose en plaques

Legal name

Fondation Eugène Devic EDMUS contre la Sclérose en Plaques

Website

https://fondation-edmus.org

Company type

Private

Founded year

2010

Operating status

Operating

Headcount range

1–10 employees

Short description

Fondation EDMUS is a French public utility foundation managing the EDMUS platform and OFSEP national MS cohort (84,244+ patients) to accelerate multiple sclerosis research, serving 400 neurologists across 45 centers and the broader MS research community.

Ownership category

akta.pro rank

Product category

Medical Research Non-Profit Foundation

NAICS

Voluntary Health Organizations (813212), Grantmaking Foundations (813211)

SIC

Services-Social Services (8300), Services-Prepackaged Software (7372)

akta.pro primary industry

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

akta.pro secondary industries

Health & Medical Research Grantmaking Foundations (BPAGAKAL), Global Health Research, Evidence & Technical Assistance Organizations (HLAJAKAN)

Keywords

• Multiple sclerosis research
• Clinical data platform
• Epidemiological observatory
• Neurological disease registry
• Patient cohort database

Headquarters

HQ city

Bron

HQ country

France

HQ region

Europe

Offices2 records

Markets served

GTM type

B2B

Offering type

Services

Cost components

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

Revenue model

1. Donations and Legacies: The foundation receives donations from individuals, companies, and organizations. Donations qualify for tax reductions: 66% income tax reduction (capped at 20% of taxable income) for income tax payers, 75% IFI reduction (capped at 50,000€) for property wealth tax payers. Legacies and life insurance designations allow donors to support the foundation after their death without inheritance taxes.
2. Corporate Patronage (Mécénat): Companies supporting the 'Comprendre pour Agir' campaign receive 60% corporate tax reduction on donations, capped at 20,000€ or 0.5% of turnover. This includes corporate sponsors, foundations, associations and businesses listed on the supporters page.
3. Research Project Funding Disbursements: Annual joint call for projects with Fondation France Sclérose En Plaques disburses up to 100,000€ per project. Since 2016, 30 projects have been funded totaling 2,320,971€ between 2016 and 2025. The foundation also leverages OFSEP data (clinical, biological, MRI, and SNDS) for research.

Pricing tiers

Go-to-market motion1 record

Distribution channels3 records

Marketing channels6 records

Core offering

Fondation EDMUS operates the EDMUS Platform, a national IT platform with separate care and research components for MS patient follow-up, and the OFSEP (Observatoire Français de la Sclérose En Plaques) cohort database covering 84,244+ patients. It funds MS research through annual joint calls for projects (up to €100,000 per project) with Fondation France Sclérose En Plaques and runs the Chaire INSPIRE interdisciplinary research program on MS-related inequalities. The foundation is a non-profit, recognized public utility, financed through donations, legacies, corporate patronage, and grants.

Product overview

Fondation EDMUS operates a unified product ecosystem centered on the Plateforme EDMUS (EDMUS Platform), which evolved from the original Logiciel EDMUS software developed in 1990. The platform comprises two interconnected components: a care platform providing shared medical records for daily neurological patient management, and a research platform centralizing patient data for clinical research. The organization's offerings are supported by the OFSEP (Observatoire Français de la Sclérose En Plaques) national registry—managed through subsidiary EDMUS Services s.a.s.—containing 84,244+ patients, the Chaire INSPIRE research chair on MS inequalities, and annual calls for research projects. Together these products form an integrated epidemiological ecosystem enabling data collection, care coordination, and research advancement against multiple sclerosis.

Differentiator

Problem solved

Functional benefit

Brands

• Chaire INSPIRE: An interdisciplinary 5-year research program analyzing determinants of inequalities induced by MS, their impact on patients' lives, and solutions. Co-led by the Foundation and EHESP (École des Hautes Études en Santé Publique), directed by Dr. Emmanuelle Leray.
• Plateforme EDMUS
• OFSEP (Observatoire Français de la Sclérose en Plaques)

Products and services

• Plateforme EDMUS National web-based IT platform with two components: a care platform providing a shared medical specialty record integrating clinical data through a unified interface and interfacing with hospital information systems (SIH), and a research platform centralizing patient data and OFSEP biological samples for clinical research. Provided free of charge to the French medical and scientific community.
• OFSEP (Observatoire Français de la Sclérose En Plaques) National MS cohort and epidemiological observatory containing clinical, biological, MRI, and SNDS (health insurance) data for over 80,000 patients (84,244 as of 2025). Managed by EDMUS Services s.a.s. on behalf of the OFSEP consortium (Hospices Civils de Lyon, Fondation EDMUS, Université Claude Bernard Lyon 1). Provides researchers with access to large-scale longitudinal MS data.
• Chaire INSPIRE Interdisciplinary 5-year research program (2022-2027) titled 'INégalités dans la Sclérose en Plaques: les IdenTifer pour y REmédier'. Co-led by Fondation EDMUS and EHESP. Analyzes determinants of social, territorial, and gender inequalities induced by MS, their impact on patient lives, and potential remedies.
• Appel à projets de recherche (Annual Joint Call for Projects) Annual competitive research funding program co-financed with Fondation France Sclérose En Plaques since 2016. Grants up to €100,000 per project for MS research using OFSEP data (clinical, biological, MRI, SNDS). 30 projects funded totaling €2,320,971 between 2016 and 2025.
• OFSEP HD Cohort (Cohorte Haute Définition) High-definition sub-cohort of OFSEP covering 2,842 patients with systematic annual follow-up in expert centers. Enriched with clinical data, quality of life, lifestyle data, comorbidities, brain MRIs, and biological samples. Used for advanced MS research requiring dense longitudinal data.

Quantifiable outcome

• 84,244 patients in OFSEP mother cohort
• +4 more outcomes

Named customers4 records

Segments5 records

Ideal customer profiles4 records

Technology focussed Yes

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature4 records

Partnerships

23 partnerships are on record, tiered core and minor.

• EHESP (École des Hautes Études en Santé Publique)coreStrategic or Co-development Partner · 1 January 2022Co-porting of the Chaire INSPIRE (INégalités dans la Sclérose en Plaques: les Iidentifer pour y REmédier), a 5-year interdisciplinary research program directed by Dr. Emmanuelle Leray. Examines factors behind MS-related inequalities, their impact on patient lives, and solutions.
• Fondation France Sclérose En PlaquescoreStrategic or Co-development Partner · 1 January 2016Annual joint call for research projects since 2016. Both foundations co-finance research projects using OFSEP data (clinical, biological, MRI, SNDS). Maximum 100,000€ per project. Since 2016, 30 projects funded totaling 2,320,971€.
• OFSEP (Observatoire Français de la Sclérose En Plaques)coreStrategic or Co-development Partner · 1 January 2010OFSEP is the French Multiple Sclerosis Observatory, a consortium of three partners (Hospices Civils de Lyon, Fondation EDMUS, and Université Claude Bernard Lyon 1). The foundation manages and perpetuates the OFSEP database through its subsidiary EDMUS Services s.a.s. OFSEP collects clinical data, MRI exams, and biological samples from MS patients across 45 centers and 400 specialists.
• Hospices Civils de LyoncoreStrategic or Co-development PartnerOne of three OFSEP consortium partners. Represented on the EDMUS Foundation board (Alexandre Pachot, Director of Health Research; Laurent Remontet, Biostatistician). Contributes to national MS data collection.
• Université Claude Bernard Lyon 1coreStrategic or Co-development PartnerOne of three OFSEP consortium partners. Contributes academic research expertise and institutional resources to the MS data collection network.
• Big Multiple Sclerosis Data NetworkminorStrategic or Co-development PartnerInternational network including IMSReg (Italy), DMSR (Denmark), SMSreg (Sweden), ReMuS (Czech Republic), and MSBase (Australia). Enables federated data analysis and cross-border MS research through standardized data models.
• SandozminorGTM or Marketing PartnerPharmaceutical company supporting the foundation as part of their corporate responsibility program.
• Groupe APICILminorGTM or Marketing PartnerInsurance and social protection group supporting the foundation as a corporate patron.
• L'Alsacien DijonminorGTM or Marketing PartnerRestaurant in Dijon supporting the foundation through the 'La Flamme Solidaire' charitable operation, with 1€ per flammenkuche donated to EDMUS.
• Groupe SamseminorGTM or Marketing PartnerBuilding materials distribution group supporting the foundation as a corporate patron.
• Harmonie MutuelleminorGTM or Marketing PartnerMutual health insurance company supporting the foundation as a corporate patron.
• Banque HottinguerminorGTM or Marketing PartnerBanking institution supporting the foundation as a corporate patron.
• SerfimminorGTM or Marketing PartnerTechnology and services group supporting the foundation as a corporate patron.
• CG ProjectminorGTM or Marketing PartnerProject management company supporting the foundation as a corporate patron.
• KyoterraminorGTM or Marketing PartnerCompany supporting the foundation as a corporate patron.
• CE RAminorGTM or Marketing PartnerWorks committee/employee association supporting the foundation as a corporate patron.
• Fondation AvenirminorGTM or Marketing PartnerFoundation supporting EDMUS as a corporate/associate patron.
• STEPminorGTM or Marketing PartnerAssociation supporting EDMUS as a patron.
• NeevaminorGTM or Marketing PartnerCompany supporting EDMUS as a patron.
• UNSSminorGTM or Marketing PartnerNational Union of School Sports supporting the foundation through solidarity operations like VTT Solidaire.
• Lions Village BeaujolaisminorGTM or Marketing PartnerLions Club district supporting the foundation as a patron.
• Les Défis d'ArmandminorGTM or Marketing PartnerPersonal initiative by Armand Thoinet (person with MS) who uses sports challenges to support the foundation and raise awareness about MS.
• STEP STOP à la SEPminorGTM or Marketing PartnerSports initiative by Pierre-Martin Aubelle including round table, 2500km cycling challenge, documentary on sport and MS, and 1000+ meetings, supporting EDMUS with 25,000€ for Chaire INSPIRE.

Scale indicators8 records

Recent moves9 records

Expansion highlights5 records

Direct peers

• Fondation pour l'Aide à la Recherche sur la Sclérose en Plaques (ARSEP): Leading French MS research foundation funding basic and clinical MS research. Directly comparable nonprofit disease-research model targeting the same French MS donor pool and research community.
• MS Research Australia: Australian MS research foundation and operator of the MSBase registry, partnered with EDMUS in Big MS Data. Directly comparable disease-research foundation with a national patient-data platform.
• Fondation France Sclérose En Plaques: French MS-focused foundation that co-funds EDMUS's annual research project calls and serves patients/families affected by MS. Directly comparable disease-specific mission and donor base, with a deeper patient-services orientation.
• Fondazione Italiana Sclerosi Multipla (FISM): Italian MS foundation (research arm of AISM) operating the IMSReg registry that is part of the Big MS Data network with EDMUS. Directly comparable disease-specific research and registry model.

Broad incumbents

• Wellcome Trust: Large global health-research foundation with a much broader portfolio than EDMUS. Comparable as a nonprofit research-funding institution, but operates at vastly greater scale and across many disease areas.
• National Multiple Sclerosis Society: The largest US-based MS nonprofit, funding MS research, advocacy, and programs. Same disease-specific mission and grantmaking/advocacy model, but operates at substantially larger scale with global reach.
• Multiple Sclerosis International Federation (MSIF): Global umbrella linking national MS societies and supporting international MS research and data collaboration. Overlaps with EDMUS's Big MS Data federated-network ambitions and disease-research advocacy.

Regional players

• Fondation pour la Recherche Médicale (FRM): Major French nonprofit funding biomedical research broadly, including MS-relevant neuroscience work. Comparable regional nonprofit grantmaking model targeting the same French donor base.
• Institut Pasteur: French nonprofit research foundation operating a national platform of laboratories and cohorts for infectious and neurological disease research. Comparable platform-based, public-utility nonprofit research model in the same French ecosystem.

Emerging players

• EURORDIS – Rare Diseases Europe: European federation representing rare-disease patient organizations and supporting cross-border registries and research. Thematically adjacent as a federated nonprofit model for advancing disease-specific research and data collaboration across Europe.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• LinkedInlinkedin.com/company/fondation-edmus-contre-la-scl%C3%A9rose-en-plaques

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles13 records

Subsidiaries1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Fondation EDMUS contre la sclérose en plaques