Maladies Rares Info Services

What Maladies Rares Info Services does

Maladies Rares Info Services is a French non-profit association (association loi 1901), founded in 2001 and headquartered in Paris, that operates the official national information, listening, and orientation service for rare diseases in France. The organization serves three primary constituencies: individuals affected by rare diseases (diagnosed or undiagnosed), parents, family members and caregivers of those patients, and healthcare professionals encountering rare disease symptoms in clinical practice. The organization was founded to address the diagnostic odyssey, social isolation, lack of specialized information, and difficulty navigating the French healthcare system to find expert rare disease care, in a country where approximately 3 million people are affected by rare conditions.

The service is delivered through multiple channels: a free national hotline (0 800 40 40 43, available Monday through Friday), an information portal at maladiesraresinfo.org, a moderated community forum at forums.maladiesraresinfo.org covering hundreds of disease-specific discussion spaces, and downloadable physical communication materials (posters, flyers, business cards) for awareness partners. The underlying platform is a web-based information portal with a moderated forum; the organization has no mobile application currently, but is associated with the forthcoming "FRANCE MALADIES RARES" application under development at BNDMR (Banque Nationale de Données Maladies Rares), with a first version expected by end of 2026. The organization is structurally embedded in the French rare disease ecosystem, formally orienting users to the Filières de Santé Maladies Rares expert networks, Orphanet, Alliance Maladies Rares (240+ member associations), Plateforme Maladies Rares, and MDPH disability services.

As a non-profit, the organization is financed through institutional grants and donations rather than service fees; all offerings are free to end users. Funders include the French Ministry of Health and Prevention (Ministère de la Santé et de l'Accès aux soins), AFM Téléthon, and Fondation Groupama. The go-to-market motion is community-led: organic social media presence across Facebook, Instagram, LinkedIn, and YouTube, an email newsletter, free physical communication kits distributed through relay partners (healthcare facilities, schools, businesses, municipalities), and volunteer recruitment through the Je Veux Aider.gouv.fr platform. The organization operates with a lean team of approximately 13 employees.

Name

Maladies Rares Info Services

Legal name

Maladies Rares Info Services

Website

https://maladiesraresinfo.org

Company type

Private

Operating status

Operating

Headcount range

11–50 employees

Short description

Maladies Rares Info Services is a French non-profit association running a free, confidential national information service for people affected by rare diseases. It serves patients, caregivers, and healthcare professionals via telephone helpline, website, moderated forum, and downloadable awareness materials.

Ownership category

akta.pro rank

Product category

Rare Disease Information & Patient Support Services

NAICS

Individual and Family Services (6241)

SIC

Services-Social Services (8300), Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

Keywords

• Rare disease information services
• Patient helpline services
• Healthcare orientation services
• Patient community forums
• Nonprofit healthcare support

Headquarters

HQ city

Paris

HQ country

France

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Public Funding and Grants: Supported by French Ministry of Health and Prevention, AFM Téléthon, and Fondation Groupama. As a non-profit association, revenue comes from institutional grants and donations rather than service fees.

Pricing tiers

Go-to-market motion1 record

Distribution channels5 records

Marketing channels8 records

Core offering

Maladies Rares Info Services operates France's national service providing free, confidential listening, information, and orientation support to patients affected by rare diseases, their families/caregivers, and healthcare professionals. Core deliverables include a free national helpline (0 800 40 40 43), email and callback support, comprehensive online information resources on rare diseases, and orientation to expert healthcare networks (Filières de Santé Maladies Rares), Orphanet, patient associations, and MDPH disability services. The service is underpinned by a moderated online community forum for peer exchange across disease-specific topics.

Product overview

Maladies Rares Info Services operates as a unified national service providing comprehensive support for rare disease patients, caregivers, and healthcare professionals in France. The core offering is the Service national d'information combining a free telephone helpline (0 800 40 40 43), online information resources, and orientation services connecting users to expert healthcare networks and patient associations. The portfolio includes an active moderated Forum platform for peer support across disease-specific topics, downloadable communication kits for awareness raising, and volunteer programs. A future mobile application called FRANCE MALADIES RARES is under development with expected availability by end of 2026.

Differentiator

Problem solved

Functional benefit

Products and services

• Service national d'information sur les maladies rares (National Rare Disease Information Service) Free, confidential national helpline, email, and callback service providing listening, information, and orientation to patients affected by rare diseases, their caregivers, and healthcare professionals in France. Includes the free number 0 800 40 40 43.
• Forum Maladies Rares (Rare Diseases Forum) Moderated online community forum for patients, families, and caregivers affected by rare diseases, organized into disease-specific discussion spaces covering hundreds of genetic, chromosomal, and rare conditions.
• Kit de communication (Communication Kit) Free downloadable and printable communication materials (posters, flyers, business cards) designed to raise awareness of rare diseases and the Maladies Rares Info Services helpline, distributed to relay partners such as healthcare facilities, schools, businesses, and municipalities across France.

Named customers3 records

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature1 record

Partnerships

Six partnerships are on record, tiered core and supporting.

• Ministère de la Santé et de l'Accès aux soinscoreOthersFrench Ministry of Health and Prevention providing institutional support and recognition as the official national rare disease information service. The organization operates under this governmental umbrella.
• Filières Maladies RarescoreStrategic or Co-development PartnerFrench Rare Disease Healthcare Networks (Filières de Santé Maladies Rares) - official networks directing patients to appropriate expert care centers. Maladies Rares Info Services orients users to these expert structures.
• OrphanetStrategic or Co-development PartnerInternational rare disease information portal (orpha.net) providing reference data on rare diseases. The organization orients users to Orphanet's comprehensive disease database.
• Alliance Maladies RarescoreStrategic or Co-development PartnerUmbrella organization representing over 240 rare disease patient associations in France. Maladies Rares Info Services collaborates on events including Regional Meetings (Rencontres Régionales) and coordinates with member associations.
• Plateforme Maladies RarescoreStrategic or Co-development PartnerThe French Rare Disease Platform coordinating rare disease activities across France. The organization links users to this coordinating body.
• BNDMR (Banque Nationale de Données Maladies Rares)supportingStrategic or Co-development PartnerNational Rare Disease Database managing the future FRANCE MALADIES RARES application. Maladies Rares Info Services forum mentions involvement in promoting this upcoming application to patients.

Scale indicators2 records

Recent moves6 records

Expansion highlights4 records

Broad incumbents

• AFM-Téléthon: Major French rare disease association (focused on neuromuscular diseases) and a financial supporter of MRIS. Operates overlapping services in information, patient support, and research funding for rare diseases — making it both a funder and a partial functional peer.
• EURORDIS - Rare Diseases Europe: European umbrella organization representing 1,000+ rare disease patient associations across 70+ countries. Operates at a broader, supranational level but overlaps directly with MRIS on patient advocacy, policy engagement, and information dissemination for rare diseases in Europe.

Direct peers

• Orphanet: INSERM-hosted international reference portal for rare diseases and orphan drugs. Highly comparable: both are trusted information and orientation resources for rare disease patients and professionals, and MRIS explicitly orients users to Orphanet — implying a peer rather than purely partner relationship.
• National Organization for Rare Disorders (NORD): US-based independent nonprofit providing patient resources, advocacy, and a rare disease database. The closest international equivalent to MRIS in mission — serving patients, caregivers, and clinicians seeking rare disease information and support — though operating at a much larger scale.
• Alliance Maladies Rares: French umbrella association of 240+ rare disease patient associations. While a close operational partner of MRIS, it also competes for the same information-and-orientation mandate toward French rare disease families and co-organizes regional events with MRIS.
• Genetic Alliance: US-based nonprofit supporting individuals and families affected by genetic conditions. Highly comparable mission: information, peer support, and advocacy for genetically-driven rare diseases, with an analogous community-of-communities model to MRIS's moderated forum.

Emerging players

• SWAN UK (Syndromes Without A Name): UK-based support organization for families affected by undiagnosed genetic conditions. Mirrors the "diagnostic odyssey" use case that is a primary problem MRIS addresses, but at smaller scale and country-specific scope.

Regional players

• Rare Voices Australia: Australian national peak body for rare diseases, advocating for and connecting Australians living with rare conditions. Functionally analogous to MRIS at the country level but serving a different geography.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/channel/UCGDbPtHM1LEV1GdvK8KF_Gg
• Facebookfacebook.com/maladierareinfo
• LinkedInlinkedin.com/company/maladies-rares-info-services
• Instagraminstagram.com/maladies_rares_info_services

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

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 Maladies Rares Info Services