Filière de santé maladies rares MaRIH

What Filière de santé maladies rares MaRIH does

Filière de santé maladies rares MaRIH is a French national healthcare network (filière de santé) dedicated to rare immuno-hematological diseases, established in 2014 and hosted at the Hôpital Saint-Louis AP-HP in Paris. It is officially designated and financed by the French Ministry of Health (Ministère chargé de la Santé) as part of the broader Filières Maladies Rares national strategy. The network coordinates over 50 reference and competence centers, scientific societies, patient associations, and research laboratories across metropolitan France and overseas territories (Reunion, Martinique, Guadeloupe), covering more than 20 rare immuno-hematological conditions including mastocytoses, histiocytoses, aplastic anemias, hereditary immune deficiencies, autoimmune cytopenias, and amyloidosis AL.

MaRIH's core product is a centralized web platform (marih.fr) that provides disease information, a specialist finder, expert-opinion multidisciplinary consultation meetings (RCP), National Protocols for Diagnosis and Care (PNDS), Orphanet emergency/disability cards, and research grant information. It also operates two patient-facing mobile applications — Mast'O for mastocytosis and ApliM'éO for other rare immuno-hematological diseases — available on the Apple Store and Google Play for symptom, treatment, and appointment tracking. Underpinning the network is BaMaRa (Banque Nationale de Données Maladies Rares), the national rare disease registry used for patient data collection across reference centers. MaRIH also participates in the France Genomic Medicine Plan 2025 (PFMG 2025) with four pre-indications for whole genome analysis, integrated with the SeqOIA (Nord) and Auragen (Sud) sequencing platforms.

MaRIH is not a commercial enterprise. It is a public-sector coordination network with an 8-person operating team, and all of its services — web content, mobile apps, MOOC, clinical guidelines, expert opinions, podcasts, and educational programs — are provided free of charge. Funding flows entirely from the French Ministry of Health. The organization's revenue model is therefore best characterized as government grant funding, and its go-to-market motion is community-led: it disseminates information through its website, newsletters, MOOC, medical broadcasts, and congress coverage (ASH, EHA, ESID) rather than through sales activity.

Name

Filière de santé maladies rares MaRIH

Legal name

Filière de santé maladies rares immuno-hématologiques MaRIH

Website

https://marih.fr

Company type

Private

Operating status

Operating

Headcount range

1–10 employees

Short description

MaRIH is a French public-sector national healthcare network coordinating care, research, and education for rare immuno-hematological diseases across 50+ reference centers, funded by the French Ministry of Health.

Ownership category

akta.pro rank

Product category

Healthcare Network Coordination Services

NAICS

Health Care and Social Assistance (62)

SIC

Services-Health Services (8000)

akta.pro primary industry

National Public Health Reference Laboratories (HLAJAIAA)

akta.pro secondary industry

Public Health & Reference Lab LIMS (HLACAMAF)

Keywords

• Rare disease healthcare
• Healthcare network coordination
• Clinical care protocols
• Medical education programs
• Patient registry services

Headquarters

HQ city

Paris

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, Others

Revenue model

1. Government Funding: MaRIH is piloted and financed by the French Ministry of Health (Ministère chargé de la Santé). All services are provided free of charge to users.

Go-to-market motion1 record

Distribution channels3 records

Marketing channels6 records

Core offering

MaRIH is the French national coordination network (filière de santé) for rare immuno-hematological diseases. It connects over 50 reference and competence centers, patient associations, and scientific societies to deliver standardized care protocols (PNDS), expert multidisciplinary consultation meetings (RCP), patient education programs, mobile health applications, and continuing medical education — all provided free of charge and funded by the French Ministry of Health.

Differentiator

Problem solved

Functional benefit

Brands

• Mast'O: Mobile application for patients with mastocytosis to track symptoms, treatments, appointments, and medical records.
• ApliMÉO

Products and services

• MaRIH Web Platform (marih.fr) Central web platform providing information on over 20 rare immuno-hematological diseases, expert center finder, RCP expert opinion requests, training programs, research grants, and patient documentation.
• Mast'O Mobile Application Mobile application for mastocytosis patients to track symptoms, treatments, appointments, examination results, and emergency recommendations, with calendar management and direct communication with medical teams.
• ApliMéO Mobile Application Mobile application supporting patients with rare immuno-hematological diseases in managing their health data, treatments, and medical appointments.
• Multidisciplinary Consultation Meetings (RCP) Expert opinion system allowing healthcare professionals to submit patient cases (clinical or genomic) for review by reference center multidisciplinary teams, providing specialist consultation for complex rare immuno-hematological disease cases.
• BaMaRa National Rare Disease Database Banque Nationale de Données Maladies Rares - national database for rare diseases, used for patient registry, data collection, diagnostic odyssey tracking, and research across reference centers.
• MOOC MaRIH Massive Open Online Course providing professional continuing medical education on rare immuno-hematological diseases for healthcare professionals.
• University Diploma Programs (DU / DIU) Three university diploma programs — DU Immuno-Hématologie et Médecine Interne, DU MAT et autres maladies immunologiques de l'hémostase, and DIU Immuno-hématologie pédiatrique — providing formal specialist credentials.
• National Protocols for Diagnosis and Care (PNDS) Standardized national clinical care protocols (Protocoles Nationaux de Diagnostic et de Soins) defining diagnosis and treatment guidelines for each rare immuno-hematological disease covered by the network.

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration9 records

Feature4 records

Partnerships

Ten partnerships are on record, tiered core and supporting.

• Ministère chargé de la Santé (French Ministry of Health)coreOthersMaRIH is officially piloted and financed by the French Ministry of Health as part of the national rare diseases strategy. The ministry provides operational funding and strategic oversight for the network.
• AVIESANcoreStrategic or Co-development PartnerAVIESAN (Alliance Nationale pour les Sciences de la Vie et de la Santé) supports the France Genomic Medicine Plan 2025 (PFMG 2025), which MaRIH participates in with 4 pre-indications for whole genome analysis.
• Filières Maladies RarescoreOthersMaRIH is part of the broader Filières Maladies Rares network, which coordinates all rare disease healthcare networks in France under the Ministry of Health.
• Hôpital Saint-Louis AP-HPcoreOthersHost institution providing physical headquarters for MaRIH at the Rare Diseases Pavilion.
• SeqOIA Platform (Nord)supportingTechnology or IntegrationNorthern France genomic sequencing platform used for whole genome analysis under PFMG 2025 pre-indications.
• Auragen Platform (Sud)supportingTechnology or IntegrationSouthern France genomic sequencing platform used for whole genome analysis under PFMG 2025 pre-indications.
• OrphanetsupportingStrategic or Co-development PartnerEuropean rare disease information portal providing emergency and disability files referenced by MaRIH for patient documentation.
• Reference Centers (Centres de Référence) and Competence Centers (Centres de Compétence)coreOthersNetwork of over 50 reference and competence centers across France specializing in rare immuno-hematological diseases, coordinated by MaRIH.
• Patient Associations (Associations de Patients)supportingOthersPatient advocacy groups affiliated with MaRIH, providing patient perspectives and support services.
• Scientific Societies (Sociétés Savantes)supportingOthersMedical professional societies collaborating with MaRIH on guidelines, education, and research initiatives.

Scale indicators2 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• Orphanet: European reference portal for rare diseases and orphan drugs, providing disease classifications, expert centers directories, and emergency/disability files. MaRIH integrates with Orphanet for patient documentation, making it a direct operational partner with overlapping scope in rare disease information infrastructure.
• EURORDIS - Rare Diseases Europe: European non-profit alliance of over 1,000 rare disease patient organizations. Comparable to MaRIH as a network-coordination entity for rare diseases, but operating at the pan-European level across all rare diseases rather than French-only immuno-hematology.
• European Reference Networks (ERNs): EU-level virtual networks connecting healthcare providers across Europe for rare and complex diseases. Comparable to MaRIH as a coordination infrastructure for rare disease expertise, but operating at the European level. ERN-EuroBloodNet covers rare hematological diseases similar to MaRIH's scope.

Regional players

• NORD (National Organization for Rare Disorders): US-based patient advocacy organization for rare diseases providing information, advocacy, and research support. Functionally comparable to MaRIH in serving as a central hub for rare disease information and patient support, but operating in the US healthcare system.

Direct peers

• Filière de Santé Maladies Rares MHEMO: French national filière for rare constitutional and acquired hemorrhagic diseases, including hemophilia and other rare bleeding disorders. Direct peer under the same national rare diseases framework with analogous structure and services.
• Maladies Rares Info Services: French national helpline and information service for rare diseases, funded by the Ministry of Health. Provides direct patient and family support including a medico-social parcours referenced by MaRIH, with overlapping mission in rare disease information dissemination.
• Alliance Maladies Rares: French national collective of over 200 rare disease patient associations. Operates as a national umbrella network very similar to MaRIH but from the patient-advocacy side, making it a structural peer in the French rare disease ecosystem.
• Filière de Santé Maladies Rares FILNEMUS: French national filière for rare neuromuscular diseases. One of the 23 filières de santé maladies rares, operating under identical Ministry of Health governance with the same coordination, PNDS, and RCP service model as MaRIH.
• Filière de Santé Maladies Rares FAI2R: Another French national filière de santé dedicated to rare autoimmune and autoinflammatory diseases, operating under the same Ministry of Health framework as MaRIH. Direct structural peer with identical mandate, governance, and funding model covering a different disease grouping.

Others

• BNDMR (Banque Nationale de Données Maladies Rares): National rare disease database infrastructure that MaRIR uses via BaMaRa. It is the upstream data platform, collecting patient records from all 23 French filières, making it a key infrastructure/partner rather than a competitor.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• LinkedInlinkedin.com/company/filiere-de-sante-maladies-rares-marih

Revenue estimate

Valuation estimate

Number of profiles

Funding overview

Funding rounds

Investors

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M&A

Investments

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