OSCAR Filière Santé Maladies Rares

What OSCAR Filière Santé Maladies Rares does

OSCAR Filière Santé Maladies Rares is a French national healthcare coordination network (filière) officially labeled in 2014 under the country's 2nd National Plan for Rare Diseases and financed and directed by the Ministère en charge de la Santé. It is the designated national network for rare diseases of bone, calcium, and cartilage, covering four pathology groups: calcium/phosphate metabolism disorders (CaP), fibrous dysplasia of bones (DFO), constitutional bone diseases (MOC), and non-vascular Ehlers-Danlos syndromes (SED-NV). The network integrates reference centers, competence centers, research laboratories, and patient associations into a unified care and research ecosystem operating across 30+ cities in metropolitan France and overseas territories, anchored at major AP-HP teaching hospitals (Bicêtre, Necker, Raymond-Poincaré) and the Hospices Civils de Lyon.

Its core 'product' is a coordination and information platform that standardizes national care pathways. Deliverables include National Diagnostic and Care Guides (PNDS), emergency cards, follow-up calendars, diagnostic decision trees, reference sheets, video tutorials, and structured Multidisciplinary Consultation Meetings (RCP). Research-side infrastructure encompasses a clinical trials database, the 'Les Restit' OSCAR' trial-result video series, the 'Au cœur de la recherche' laboratory tour series, scientific newsletters, project call administration, and participation in the FrBioNet biocollections mapping project. Distribution is through a hub-and-spoke model: a Coordinating Reference Center (Raymond-Poincaré, Garches), Constitutive Reference Centers (e.g., Necker), and 25+ Competence Centers, supplemented by direct digital channels (newsletter, YouTube, LinkedIn, Facebook, Instagram, podcasts).

OSCAR does not operate a commercial revenue model; all services are provided free of charge to patients and healthcare professionals. Funding comes entirely from the French Ministry of Health as part of the National Rare Diseases Strategy, with revenue not publicly disclosed. The organization is connected to European Reference Networks (notably ReCONNET for connective tissue diseases), placing it within the EU rare-disease infrastructure. Operational structure is lean — a core coordinating team of about 5 people supported by the wider network of clinicians and researchers — and the entity's value proposition rests on its statutory designation, geographic reach, and integrated care/research coordination rather than on proprietary technology.

Name

OSCAR Filière Santé Maladies Rares

Legal name

Filière OSCAR

Website

https://filiere-oscar.fr

Company type

Private

Founded year

2014

Operating status

Operating

Headcount range

1–10 employees

Short description

OSCAR Filière Santé Maladies Rares is the French national healthcare network, funded by the Ministry of Health, that coordinates reference centers, competence centers, researchers, and patient associations to standardize diagnosis, care, and research for rare bone, calcium, and cartilage diseases across France and overseas territories.

Ownership category

akta.pro rank

Product category

Rare Disease Healthcare Coordination

NAICS

Scientific Research and Development Services (5417), Research and Development in the Physical, Engineering, and Life Sciences (54171), Research and Development in the Social Sciences and Humanities (541720)

SIC

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

akta.pro primary industry

Global Health Research, Clinical Trials & Product Development Partnerships (PDPs) (HLAJAOAM)

akta.pro secondary industries

Global Health Research, Evidence & Technical Assistance Organizations (HLAJAKAN), Real-World Evidence (RWE) & HEOR for Development (HLAIALAI), Real-World Data (RWD) / Real-World Evidence (RWE) & Observational Research Platforms (HLACAOAM)

Keywords

• Rare disease network
• Clinical care pathways
• Rare bone diseases
• Diagnostic care guides
• Clinical trial coordination

Headquarters

HQ city

Le Kremlin-Bicêtre

HQ country

France

HQ region

Europe

Offices5 records

Markets served

GTM type

B2B and B2C

Offering type

Services

Cost components

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

Revenue model

1. Public Government Funding: OSCAR is financed and piloted by the French Ministry of Health (Ministère en charge de la Santé), operating as a public healthcare coordination network under the National Rare Diseases Plan

Go-to-market motion1 record

Distribution channels1 record

Marketing channels5 records

Core offering

OSCAR coordinates a national French healthcare network for rare diseases affecting bone, calcium, and cartilage. Its core offering is the integration of clinical care pathways, diagnostic and treatment protocols (PNDS), multidisciplinary consultation meetings (RCP), an interactive provider directory, clinical trials database, scientific newsletters, research project funding calls, and patient education resources—delivered as a free public-health service funded and piloted by the French Ministry of Health.

Product overview

OSCAR Filière Santé Maladies Rares is a national healthcare network funded and piloted by the French Ministry of Health, dedicated to rare diseases of the bones, calcium, and cartilage. The organization does not offer a commercial product in the traditional sense but serves as a coordination and information platform providing care pathways, diagnostic tools, research coordination, professional training, clinical trial databases, patient resources, and a healthcare provider directory. Key offerings include: multidisciplinary consultation meetings (RCP), care and diagnostic guides, research newsletters, clinical trials listings organized by pathology group, patient association support, and emergency protocols.

Differentiator

Problem solved

Functional benefit

Products and services

• Care and Diagnostic Guides (Guides des soins / PNDS) Comprehensive guides for the diagnosis and care of rare bone, calcium, and cartilage diseases, including National Diagnostic and Care Protocols (PNDS), decision trees, reference sheets, and video tutorials, intended for use by healthcare professionals.
• Multidisciplinary Consultation Meetings (RCP) Structured meetings bringing together healthcare professionals across specialties to discuss and review complex patient cases of rare bone, calcium, and cartilage diseases.
• Clinical Trials Database Comprehensive listing of ongoing clinical trials across four pathology groups: calcium/phosphate metabolism diseases, fibrous dysplasia of bones, constitutional bone diseases, and non-vascular Ehlers-Danlos syndromes.
• Healthcare Provider Directory (Annuaire du réseau OSCAR) Interactive map and searchable directory of care centers across France, including reference centers, constitutive reference centers, and competence centers, for patients and healthcare professionals.
• Les Restit' OSCAR (Video Series) Video series presenting clinical trial results in accessible language for patients and healthcare professionals within the OSCAR network.
• Au cœur de la recherche (Video Series) Video series showcasing research teams and scientific work within the OSCAR network, providing behind-the-scenes views of rare disease research laboratories.
• Scientific Newsletters Quarterly scientific newsletters providing research updates, clinical trial information, project calls, and congress reports across all four OSCAR pathology groups (CaP, DFO, MOC, SED-NV).
• Project Calls (Appels à projets) Research funding opportunities distributed through OSCAR, including internal research project calls, PNDS and Therapeutic Patient Education (ETP) project calls, and external project calls.

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

Three partnerships are on record, tiered core.

• ReCONNET (European Reference Network)coreStrategic or Co-development Partner · 1 January 2025OSCAR is connected to ReCONNET, the European Reference Network for Rare Connective Tissue Diseases, specifically for Ehlers-Danlos syndromes and related conditions. This partnership facilitates cross-border healthcare collaboration and knowledge sharing within the European reference network framework.
• FrBioNet (France BioNet)coreStrategic or Co-development Partner · 1 January 2025OSCAR participates in FrBioNet, a national project for mapping biocollections in France. This initiative, aligned with the National Rare Diseases Plan 4 (PNMR4), aims to strengthen databases and biobanks for rare disease research, diagnosis, and innovation.
• French Ministry of HealthcoreOthersOSCAR is financed and piloted by the Ministry in charge of Health, operating as an official public health coordination network under the National Rare Diseases Plan framework.

Scale indicators2 records

Recent moves7 records

Expansion highlights5 records

Broad incumbents

• INSERM: French national institute for health and medical research, host of research laboratories linked to OSCAR's network (e.g., LyOS UMR 1033). Broader incumbent providing the research infrastructure and scientific coordination that OSCAR draws upon.
• NIH NCATS - National Center for Advancing Translational Sciences: US federal center coordinating translational research including the RDCRN rare disease network. Broader incumbent providing institutional umbrella and funding for distributed rare disease research consortia analogous to OSCAR's national coordination role.
• AP-HP - Assistance Publique - Hôpitaux de Paris: Parent hospital group hosting OSCAR's headquarters and multiple reference centers. Broader incumbent providing the underlying clinical infrastructure, research capabilities, and operational governance that OSCAR coordinates.

Direct peers

• NORD - National Organization for Rare Disorders: US-based umbrella organization for rare disease patient organizations, providing advocacy, research coordination, and patient resources. Directly comparable in function to OSCAR's national coordination role for rare disease care and research.
• Orphanet: European reference portal for rare diseases providing a comprehensive inventory of rare diseases, expert centers, diagnostic tools, and clinical trials. Directly comparable to OSCAR's role as an information and coordination hub for rare disease expertise.
• RDCRN - Rare Diseases Clinical Research Network: NIH-funded US network of clinical research consortia studying rare diseases. Directly comparable as a research coordination network with distributed centers, standardized protocols, and clinical trial infrastructure for rare diseases.
• Filière FILNEMUS: French national rare disease filière for neuromuscular diseases, operating under the same Ministry of Health framework as OSCAR. Directly comparable in structure, governance, and operational model for a different disease group.
• ERN ReCONNET: European Reference Network for Rare Connective Tissue Diseases, an existing partner of OSCAR. Directly comparable as a cross-border coordination network linking expert centers for rare disease diagnosis and care.
• EURORDIS - European Organisation for Rare Diseases: Pan-European umbrella organization coordinating national rare disease alliances, patient associations, and policy advocacy. Directly comparable to OSCAR as a rare disease coordination and advocacy network, operating at the European rather than national level.
• Filière AnDDI-Rares: Another French national rare disease filière under the Ministry of Health, dedicated to developmental anomalies and intellectual disabilities. Directly comparable as a sister filière sharing the same institutional framework, funding model, and coordination mandate.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/channel/UCz1PsLVv7-YJd_HjxNq4xZQ
• Facebookfacebook.com/filiere.OSCAR
• LinkedInlinkedin.com/company/filiere-oscar
• Instagraminstagram.com/filiere.oscar?igsh=YnpwZjY5a3RnNmFn

Revenue estimate

Valuation estimate

Number of profiles

Profiles3 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about OSCAR Filière Santé Maladies Rares