Vaincre La Mucoviscidose

What Vaincre La Mucoviscidose does

Vaincre la Mucoviscidose is a French non-profit association (loi 1901), founded in 1965 and recognized as being of public utility, dedicated to combating cystic fibrosis through four missions: curing the disease, treating patients today, supporting patients and families to live with the condition, and raising public awareness. It serves three primary stakeholder groups: (1) French CF patients and their families, who benefit from financial aid, social accompaniment, schooling and professional integration support, and quality-of-life programs; (2) healthcare professionals and researchers working in CF, who receive research grants, access to the French CF Registry, the clinical trials directory, and participation in national and European colloquia; and (3) the general public and donors, who fund the association through donations, memberships, bequests, and events. The association operates a network of 29 territorial delegations across France, publishes the Magazine Vaincre and the Le Lien newsletter, and runs major annual fundraising campaigns including Les Virades de l'espoir, SAM (Stream Against Muco), Move for Muco, and the Green de l'espoir.

Its core technology footprint comprises three assets: the Registre français de la mucoviscidose, a longitudinal epidemiological patient registry used for research and quality-of-care monitoring; MucoDoméos, a specialized software application tailored to the workflow of the CRCM (Centres de Ressources et de Compétences de la Mucoviscidose) care centers created in 2002; and the Répertoire des essais cliniques, an online directory of CF-related clinical trials accessible to researchers and patients. Underlying technology is conventional web and database infrastructure, hosted by Magic Online and maintained by Ecedi.

The association is funded 95% by public generosity (donations, memberships, bequests, fundraising events), with the remainder from other partnership sources, and is a member of the Comité de la charte du Don en confiance. It has invested €2,056,002 in 34+ research projects, supported 30–40 young scientists annually (making it the first European financier of young CF researchers), disbursed approximately €599,000 in financial aid to 525 patients and families in 2021, and partners with seven European patient associations to co-organize the European Young Investigator Meeting (EYIM). Governance is provided by a Board of Directors chaired by President David Fiant, with Thierry Nouvel as Director General and Paola De Carli leading the Research department.

Name

Vaincre La Mucoviscidose

Legal name

Vaincre la Mucoviscidose

Website

https://vaincrelamuco.org

Company type

Private

Founded year

1965

Operating status

Operating

Headcount range

11–50 employees

Short description

Vaincre la Mucoviscidose is a French non-profit association founded in 1965 that fights cystic fibrosis through research funding, patient support, the French CF Registry, and 29 territorial delegations across France.

Ownership category

akta.pro rank

Product category

Disease Advocacy and Patient Support

NAICS

Other Individual and Family Services (624190), Scientific Research and Development Services (5417)

SIC

Services-Health Services (8000)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

Keywords

• Cystic fibrosis research
• Patient advocacy services
• Rare disease association
• Research grant funding
• Medical patient registry

Headquarters

HQ city

Paris

HQ country

France

HQ region

Europe

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Distribution channels4 records

Marketing channels9 records

Core offering

Vaincre la Mucoviscidose is a French non-profit association (loi 1901, reconnue d'utilité publique) that fights cystic fibrosis by funding scientific research, providing direct patient and family support services, operating the national French Cystic Fibrosis Registry, and running large-scale awareness and fundraising campaigns. It distributes support through 29 territorial delegations across France and partners with specialized CRCM care centers.

Product overview

Vaincre la Mucoviscidose operates primarily as a non-profit association rather than a product company. Its offerings include MucoDoméos (a software tool for CRCM healthcare centers), the French Cystic Fibrosis Registry (epidemiological data platform), a clinical trials directory, and various patient support services including financial aid programs. The organization provides educational resources segmented by age groups (3-6, 7-12, 13-18 years, and students), manages major fundraising events (Virades de l'espoir, SAM, Move for Muco), funds research through annual grant programs (Appel à projets), organizes scientific colloquia for young researchers, and publishes the expert magazine Vaincre. The organization also maintains 29 territorial delegations across France and provides a patient helpline.

Differentiator

Problem solved

Functional benefit

Brands

• Les Virades de l'espoir: Major annual fundraising event for cystic fibrosis awareness and fundraising
• SAM - Stream Against Muco
• Move for Muco
• Green de l'espoir
• ViVa 2026
• Colloque français des jeunes chercheurs
• European Young Investigator Meeting (EYIM)
• Espace Jeunes
• MucoDoméos

Products and services

• MucoDoméos Specialized software adapted to the needs of CRCM (Centres de Ressources et de Compétences de la Mucoviscidose) centers for managing cystic fibrosis patient care and data. Targets healthcare professionals and care center staff.
• Registre français de la mucoviscidose (French Cystic Fibrosis Registry) National epidemiological registry of cystic fibrosis patients, collecting data to support research, quality of care studies, and public health statistics. Targets researchers, healthcare authorities and clinicians.
• Répertoire des essais cliniques Online directory listing clinical trials related to cystic fibrosis, accessible to researchers and patients.
• Aides financières (Financial Aid Program) Financial assistance program that grants aid to patients and families affected by cystic fibrosis to improve their quality of life (e.g., 599,000€ distributed to 525 beneficiaries in 2021).
• Appel à projets de recherche (AP) - Research Grant Program Annual competitive research grant program funding fundamental, clinical, and social sciences research projects on cystic fibrosis. Targets academic researchers and clinical scientists.
• Les Virades de l'espoir Major annual fundraising event with local manifestations across France raising awareness and funds for cystic fibrosis research and patient support.
• SAM - Stream Against Muco Online streaming event campaign that raises funds and awareness for cystic fibrosis through digital participation.
• Move for Muco Physical activity-based fundraising campaign encouraging participants to move and raise money for the fight against cystic fibrosis.
• Colloque français des jeunes chercheurs Annual French scientific symposium bringing together young researchers (PhD and post-doctoral) to present and discuss cystic fibrosis research.
• Colloque européen des jeunes chercheurs (EYIM) Annual European symposium co-organized in partnership with patient associations from Germany, Belgium, Ireland, Italy, Netherlands, Great Britain, and Switzerland, bringing together young researchers across nationalities.
• Magazine Vaincre Expert magazine dedicated to cystic fibrosis providing information to patients, families and healthcare professionals.
• Appel à projets médical 2026 Targeted annual medical research call for projects aimed at caregivers and clinicians working in cystic fibrosis care.

Quantifiable outcome

• 2,056,002 million euros invested in 34+ research projects
• +3 more outcomes

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

Nine partnerships are on record, tiered core and minor.

• CF Europe (Cystic Fibrosis Europe)coreStrategic or Co-development Partner · 1 January 2007Collaboration with CF Europe to organize the annual European Young Researchers Symposium (EYIM), bringing together young researchers from multiple European countries and patient associations.
• European Patient Associations (Germany, Belgium, Ireland, Italy, Great Britain, Netherlands, Switzerland)coreStrategic or Co-development Partner · 1 January 2007Seven European patient organizations partnering with Vaincre la Mucoviscidose to co-organize the annual European Young Researchers Colloquium.
• Fondation Maladies RarescoreStrategic or Co-development PartnerPartnership for the joint 'Sciences Humaines et Sociales & Maladies Rares' (SHS&MR) call for projects, co-funding human and social sciences research on cystic fibrosis. Since 2021, 4 projects have benefited from this complementary financing.
• Teva SantéminorGTM or Marketing PartnerSupported the redesign of the homepage and simplification of the site's navigation structure.
• Association Grégory LemarchalcoreStrategic or Co-development PartnerPartnership for funding the laboratory of Biotechnologie et signalisation cellulaire (CNRS / Université de Strasbourg) - UMR 7242.
• Belin EducationminorGTM or Marketing PartnerCollaboration to create pedagogical materials for schools, including quiz documents, reference documents for volunteers, and educational materials for college and high school sensitization sessions.
• PlaybacminorGTM or Marketing PartnerPartnership for creating educational posters and journals for primary school students to raise awareness about cystic fibrosis.
• Sqool TVminorGTM or Marketing PartnerEducational television channel hosting interviews and content about cystic fibrosis, including participation from association leadership and healthcare professionals.
• Dr Nozman (YouTuber)minorGTM or Marketing PartnerScience YouTuber with nearly 4 million subscribers created a video explaining cystic fibrosis for the Stream Against Muco event.

Scale indicators7 records

Recent moves4 records

Expansion highlights6 records

Direct peers

• Mucoverein e.V. (Mukoviszidose e.V.): German national cystic fibrosis patient association, a designated partner of Vaincre la Mucoviscidose in the European Young Researchers Symposium. Operates registry, research funding, and patient support services analogous to the French association.
• Cystic Fibrosis Canada: Canadian national charity funding CF research and patient programs. Comparable organizational model: research grants, patient support services, registry operations, and national awareness events.
• Fondation Maladies Rares: French rare disease foundation that co-funds the SHS&MR research call with Vaincre la Mucoviscidose. Operates in the same organizational niche — French rare-disease research funding and policy advocacy — with overlapping donor and policy constituencies.
• Association Grégory Lemarchal: French nonprofit also dedicated to fighting cystic fibrosis. Active co-funding partner with Vaincre la Mucoviscidose on the Biotechnologie et signalisation cellulaire lab (CNRS / Université de Strasbourg) — a direct competitor for French CF donors and research grants.
• Alliance Maladies Rares: French national coalition of rare disease patient associations. Competes for the same French donor and policy attention as Vaincre la Mucoviscidose and represents a coordination/collective advocacy counterparty for its policy work.
• Cystic Fibrosis Europe (CF Europe): Umbrella federation of European CF patient associations, co-organizer of the European Young Researchers Symposium with Vaincre la Mucoviscidose. Operates at pan-European level across the same disease area and patient-advocacy constituency.
• Cystic Fibrosis Foundation: The leading US-based nonprofit dedicated to cystic fibrosis, funding research, operating a national patient registry, and supporting care centers. Directly comparable to Vaincre la Mucoviscidose in mission, registry operation, and research grantmaking — only at significantly larger scale.
• Cystic Fibrosis Trust: UK national charity for cystic fibrosis funding research, providing patient support, and operating the UK CF Registry. Closely mirrors Vaincre la Mucoviscidose's integrated research + patient support model in a comparable national healthcare context.

Broad incumbents

• EURORDIS - Rare Diseases Europe: European-level umbrella for rare disease patient organizations. Comparable in advocacy and patient-support mission across all rare diseases, of which cystic fibrosis is one — broader in scope, larger in constituency.

Others

• Orphanet: European reference portal for rare diseases including cystic fibrosis, providing epidemiological data, disease classifications, and resources. An enabling/ecosystem player whose registry and classification work overlaps with Vaincre la Mucoviscidose's French CF Registry.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xtwitter.com/vaincrelamuco
• YouTubeyoutube.com/c/assovaincrelamuco_officiel
• Facebookfacebook.com/VaincrelaMucoviscidose
• LinkedInlinkedin.com/company/vaincre-la-mucoviscidose
• Instagraminstagram.com/vaincrelamuco

Revenue estimate

Valuation estimate

Number of profiles

Profiles10 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Vaincre La Mucoviscidose