What Filnemus does

Filnemus (legal name: Filière de santé maladies rares Filnemus) is a French national rare-disease healthcare coordination network (Filière de Santé Maladies Rares, FSMR) established in 2014 under the Direction Générale de l'Offre de Soins (DGOS) of the French Ministry of Health. It coordinates 68 expert centers — reference centers (CRMR) and competence centers (CCMR) — across metropolitan France and overseas territories (Guadeloupe, Martinique, Guyane, La Réunion, Mayotte), covering rare neuromuscular and mitochondrial diseases including muscular diseases, peripheral nerve disorders, motor neuron diseases, and neuromuscular transmission disorders. The network is hosted by AP-HM (Assistance Publique - Hôpitaux de Marseille) at Hôpital de la Timone, Marseille, and is coordinated by Professor Shahram Attarian. It was re-labelled/re-certified by DGOS in 2022.

Its core offerings are not commercial software products but a coordinated service ecosystem: an interactive map locating expert centers, clinical trial directories for adult and pediatric patients, molecular diagnostic organization via NGS-based laboratories and the PFMG 2025 framework, the DEPISMA neonatal screening pilot for spinal muscular atrophy, the BaMaRa national rare disease database integration, and patient resources including emergency cards and Orphanet fact sheets. Educational and research services include e-learning modules, live and on-demand webinars, a podcast series spanning ten-plus disease areas, dedicated research working groups (Cardiomyopathies, Charcot-Marie-Tooth, Titin Consortium, FSHD, mitochondrial diseases, extracellular matrix, calcium release myopathies), and annual and thematic scientific conferences. Distribution runs through the website (filnemus.fr), expert centers, patient associations (AFM Téléthon, AFCA, AFNP, AMIS, CMT France), and partner bodies (BNDMR, Orphanet, Plateforme Maladies Rares, EURORDIS).

The business model is non-commercial: Filnemus is financed through DGOS government allocations under the French rare-disease framework, with all services — educational content, webinars, coordination, and patient resources — provided free of charge to patients, families, and healthcare professionals. There is no disclosed pricing, no commercial revenue, and no customer billing. The operating status is active, with current and upcoming programs (including the 13e Journées annuelles 2026) signaling continued institutional mandate and steady operational cadence.

Name

Filnemus

Legal name

Filière de santé maladies rares Filnemus

Website

https://filnemus.fr

Company type

Private

Founded year

2014

Operating status

Operating

Headcount range

51–100 employees

Short description

Filnemus is a French government-funded rare-disease healthcare coordination network (FSMR) that links 68 expert centers across France and overseas territories to coordinate care, education, and research for rare neuromuscular and mitochondrial diseases, operating under DGOS oversight.

Ownership category

akta.pro rank

Product category

Rare Disease Healthcare Coordination

NAICS

Health Care and Social Assistance (62), Home Health Care Services (62161)

SIC

Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

Neurology Telemedicine Platforms (HLALAGAC)

akta.pro secondary industries

Transitional Care Units (TCU) (HLAFAFAF), Virtual Urgent Care & On-Demand Teletriage Services (HLAFADAJ)

Keywords

• Rare neuromuscular diseases
• Healthcare coordination network
• Clinical trial directories
• Molecular diagnostic services
• Neonatal screening programs

Headquarters

HQ city

Marseille

HQ country

France

HQ region

Europe

Offices1 record

Markets served

GTM type

B2B and B2C

Offering type

Services

Cost components

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

Distribution channels2 records

Marketing channels8 records

Core offering

Filnemus is a French national healthcare coordination network (Filière de Santé Maladies Rares) for rare neuromuscular and mitochondrial diseases. It coordinates 68 expert reference and competence centers across France and its overseas territories, providing care coordination, clinical guidelines (PNDS), molecular diagnostic organization using NGS, neonatal screening programs (DEPISMA), clinical trial directories, e-learning modules, webinars, podcasts, and patient resources including emergency cards. All services are publicly funded and provided free of charge to patients and healthcare professionals.

Product overview

Filnemus (Filière de Santé Maladies Rares Neuromusculaires) is a French rare neuromuscular disease healthcare coordination network, not a traditional software product company. It operates a comprehensive ecosystem of services centered around 68 expert centers across France. The core offerings include an interactive map for locating specialized care, clinical trial directories organized by disease type for both adult and pediatric patients, molecular diagnostic organization using NGS technologies, and neonatal screening programs. Educational services encompass webinars, e-learning modules, podcasts, and annual/thematic conferences. The network also coordinates research through specialized working groups and maintains patient resources including emergency cards and the BaMaRa national database. These services function as an integrated healthcare coordination platform rather than a unified software product.

Differentiator

Problem solved

Functional benefit

Products and services

• Interactive Map of Healthcare Centers (Carte Interactive) An interactive digital map that enables patients and healthcare professionals to locate the 68 expert reference (CRMR) and competence (CCMR) centers for rare neuromuscular diseases across all French regions and overseas territories.
• Filnemus Webinars (Webinaires FILNEMUS) Live and on-demand webinar series for healthcare professionals covering various neuromuscular disease topics with expert presentations and clinical case discussions.
• E-Learning Modules Self-paced online educational modules covering diagnostic approaches and specific neuromuscular disease categories, accessible to healthcare professionals for continuing medical education.
• Clinical Trial Directories (Annuaires des essais thérapeutiques) Organized directories of ongoing therapeutic clinical trials for neuromuscular diseases, with separate sections for adult and pediatric patients across multiple disease categories.
• Molecular Diagnostic Organization (Diagnostic moléculaire) Coordination of genetic diagnostics for rare neuromuscular diseases using high-throughput next-generation sequencing (NGS) to analyze multiple disease-related genes simultaneously, including post-genomic multidisciplinary review meetings (RCP).
• Neonatal Screening Program (DEPISMA) Prefigurational neonatal screening program (DEPISMA) for spinal muscular atrophy (SMA) designed to enable early detection and timely therapeutic intervention in newborns.
• Research Working Groups (Groupes de Travail Recherche) Specialized research coordination groups focused on specific disease areas including cardiomyopathies, Charcot-Marie-Tooth, Titin Consortium, FSHD, mitochondrial diseases, extracellular matrix, and calcium release myopathies.
• Emergency Cards (Cartes d'urgence Filnemus) Emergency cards and protocols designed for neuromuscular disease patients to communicate critical medical information during urgent care situations, complementing Orphanet emergency fact sheets.
• Podcast Series Audio podcast series covering various neuromuscular conditions including hATTR amyloidosis, spinal muscular atrophy, Charcot-Marie-Tooth, Duchenne muscular dystrophy, Pompe disease, myasthenia, and diagnostic wandering topics.
• Annual Filnemus Conference (Journées annuelles FILNEMUS) Annual scientific conference (held since 2015, currently in 13th edition) bringing together healthcare professionals and researchers to discuss advances in rare neuromuscular diseases, with recordings available for participants.
• Thematic Days (Journées thématiques) Focused educational workshops on specialized topics including databases and registries, heart-muscle relationships, inflammatory muscle diseases (JIMI), innovative therapies, patient evaluation tools, and ethical considerations.
• BaMaRa National Rare Disease Database National rare disease database (Banque Nationale de Données Maladies Rares) used for recording patient data to improve care quality and support research initiatives.

Quantifiable outcome

• 68 expert centers coordinated nationwide
• +1 more outcomes

Named customers2 records

Segments2 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature4 records

Partnerships

Ten partnerships are on record, tiered core and major.

• AFM TéléthoncoreStrategic or Co-development PartnerMajor patient organization partner providing extensive documentation, Myobase database portal, and collaborative resources for neuromuscular disease patients and families.
• AFCA (Association Française contre l'Amylose)coreStrategic or Co-development PartnerPatient association providing education and support for amyloid disease patients, with e-learning programs and documentation.
• AFNP (Association Française contre les Neuropathies Périphériques)coreStrategic or Co-development PartnerPatient organization focused on inflammatory and dysimmune peripheral neuropathies, providing educational materials and patient support.
• AMIS (Association de malades de la Myasthénie)coreStrategic or Co-development PartnerPatient association for myasthenia gravis providing documentation, videos, and support resources.
• CMT FrancecoreStrategic or Co-development PartnerPatient association for Charcot-Marie-Tooth disease providing resources and community support.
• BNDMR (Banque Nationale des Données Maladies Rares)majorStrategic or Co-development PartnerNational database for rare diseases that Filnemus contributes patient data to for research and care improvement.
• OrphanetmajorStrategic or Co-development PartnerEuropean portal for rare diseases providing emergency protocols and disease classification codes used by Filnemus.
• DGOS (Direction Générale de l'Offre de Soins)coreOthersFrench Ministry of Health department that funds and designates Filnemus as an official rare diseases health network (FSMR).
• Plateforme Maladies RaresmajorStrategic or Co-development PartnerNational rare diseases platform coordinating all French rare disease networks and initiatives.
• EURORDISmajorStrategic or Co-development PartnerEuropean organization representing rare disease patients, providing international collaboration and advocacy.

Scale indicators2 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• Orphanet: European reference portal for rare diseases maintained by INSERM, providing disease classifications, emergency fact sheets, and expert center directories. Filnemus both partners with Orphanet and mirrors its emergency protocols, making it a direct functional peer in rare neuromuscular disease information infrastructure.

Direct peers

• EURORDIS - Rare Diseases Europe: European alliance of rare disease patient organizations that Filnemus partners with for international advocacy and collaboration. Operates at the pan-European rare disease coordination layer parallel to Filnemus's national neuromuscular coordination role.
• TREAT-NMD: Global neuromuscular diseases network coordinating registries, care standards, and translational research. Closest international functional peer to Filnemus for rare neuromuscular disease coordination and patient registries.
• Filière AnDDI-Rares: Sister French rare disease FSMR for developmental anomalies and intellectual disabilities. Operates under the identical DGOS-designated FSMR framework as Filnemus and shares governance, funding, and reporting structures.
• Filière OSCAR: Sister FSMR for rare bone, calcium, and cartilage diseases. Same DGOS designation and structural model as Filnemus; provides a benchmark for how comparable coordination networks operate in adjacent therapeutic areas.
• Filière RespiFIL: Sister FSMR for rare respiratory diseases operating under the same DGOS-call framework as Filnemus, with analogous expert-center network, e-learning, and patient pathways. Direct structural peer across rare disease verticals.
• Plateforme Maladies Rares: National French umbrella platform coordinating all FSMRs (including Filnemus) with research, education, and policy missions. Effectively Filnemus's peer in the meta-coordination layer for rare disease policy.
• European Reference Network EURO-NMD: European Reference Network for rare neuromuscular diseases coordinating expert centers across EU member states. Highly comparable to Filnemus as it organizes the same patient population and clinical expertise, just at a supranational rather than national level.

Others

• AFM Téléthon: Major French patient organization and long-standing strategic partner of Filnemus, funding research and supporting neuromuscular patients through Myobase database. While not a coordination network itself, it is the dominant ecosystem anchor against which Filnemus operates.
• BNDMR (Banque Nationale de Données Maladies Rares): French national rare disease database that Filnemus contributes patient data to. Functions as upstream enabling infrastructure for Filnemus's data and research coordination work.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/filnemus
• LinkedInlinkedin.com/company/filnemus

Revenue estimate

Valuation estimate

Number of profiles

Profiles7 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Filnemus