Vaincre La Mucoviscidose
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.
- Company typePrivate
- Founded1965
- HeadquartersParis, France
- Headcount11–50
- GTM typeB2C
- OfferingServices
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.
Vaincre La Mucoviscidose firmographics
Firmographics- 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
Vaincre La Mucoviscidose industry classification
Industry- 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
Where Vaincre La Mucoviscidose is headquartered
LocationHeadquarters
- HQ city
- Paris
- HQ country
- France
- HQ region
- Europe
Offices2 records
Markets served
Vaincre La Mucoviscidose business model
Business model- 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
Vaincre La Mucoviscidose product offering
Product offeringCore 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
Companies that use Vaincre La Mucoviscidose
Customer profileSegments3 records
Ideal customer profiles3 records
Vaincre La Mucoviscidose technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Feature3 records
Vaincre La Mucoviscidose partnerships and signals
Strategic signalPartnerships
Nine partnerships are on record, tiered core and minor.
- CF Europe (Cystic Fibrosis Europe)coreCollaboration 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)coreSeven European patient organizations partnering with Vaincre la Mucoviscidose to co-organize the annual European Young Researchers Colloquium.
- Fondation Maladies RarescorePartnership 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 SantéminorSupported the redesign of the homepage and simplification of the site's navigation structure.
- Association Grégory LemarchalcorePartnership for funding the laboratory of Biotechnologie et signalisation cellulaire (CNRS / Université de Strasbourg) - UMR 7242.
- Belin EducationminorCollaboration to create pedagogical materials for schools, including quiz documents, reference documents for volunteers, and educational materials for college and high school sensitization sessions.
- PlaybacminorPartnership for creating educational posters and journals for primary school students to raise awareness about cystic fibrosis.
- Sqool TVminorEducational television channel hosting interviews and content about cystic fibrosis, including participation from association leadership and healthcare professionals.
- Dr Nozman (YouTuber)minorScience 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
Vaincre La Mucoviscidose competitors and assessment
Company assessmentDirect 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
Vaincre La Mucoviscidose social profiles
Digital presenceVaincre La Mucoviscidose financial estimates
Financial estimateRevenue estimate
Valuation estimate
Vaincre La Mucoviscidose leadership team
Management profileNumber of profiles
Profiles10 records
Vaincre La Mucoviscidose funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Vaincre La Mucoviscidose M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about Vaincre La Mucoviscidose
What does Vaincre La Mucoviscidose do?
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.
Is Vaincre La Mucoviscidose a public or private company?
Vaincre La Mucoviscidose is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Vaincre La Mucoviscidose founded?
Vaincre La Mucoviscidose was founded in 1965. It employs 11 to 50 people.
Where is Vaincre La Mucoviscidose based?
Vaincre La Mucoviscidose is headquartered in Paris, France, in the Europe region.
Who are Vaincre La Mucoviscidose's main competitors?
Direct peers on record are Mucoverein e.V. (Mukoviszidose e.V.), Cystic Fibrosis Canada, Fondation Maladies Rares, Association Grégory Lemarchal, Alliance Maladies Rares, Cystic Fibrosis Europe (CF Europe), Cystic Fibrosis Foundation and Cystic Fibrosis Trust. EURORDIS - Rare Diseases Europe is listed as a broad incumbent. Orphanet is listed as an others.
Does Vaincre La Mucoviscidose have an API?
No public API is recorded for Vaincre La Mucoviscidose.
What industry is Vaincre La Mucoviscidose in?
Vaincre La Mucoviscidose's product category is Disease Advocacy and Patient Support. Its primary akta.pro industry code is BPAGACAM, Rare Disease & Special Needs Support Organizations. Its NAICS code is 624190 and its SIC code is 8000.