Vaincre Les Maladies Lysosomales

What Vaincre Les Maladies Lysosomales does

Vaincre Les Maladies Lysosomales (VML) is a French non-profit patient association founded in 1990 by parents and adult patients to advance the fight against lysosomal storage diseases (LSDs). The association operates from Massy, France, and serves the country's estimated 2,000 patients affected by more than 60 distinct lysosomal diseases — including Gaucher, Pompe, Fabry, Sanfilippo, and Niemann-Pick — with one new diagnosis occurring every three days. Its mission spans three axes: supporting patients and families, representing their interests in healthcare policy, and funding scientific and medical research. The organization is self-described as the premier French associative funder of lysosomal disease research.

VML's "products" are member and patient services rather than technology. The portfolio includes a member portal (Espace Adhérent), a family helpline (Ligne Accueil Famille), an individualized accompaniment service (F.A.R.E.), family weekends, respite support, a bereavement program (La Forêt des Anges), the Portail des Maladies Lysosomales information portal, and the Webinaires du Lysosome educational webinar series. Research-side offerings consist of annual competitive calls for projects, funded scientific programs, and the annual Clés du Lysosome ceremony hosted at Institut Imagine to recognize outstanding researchers. VML does not develop proprietary technology; its digital stack is composed of third-party platforms — iRaiser for donations and membership, Hello Asso for the Boutique du Lysosome merchandise shop — alongside standard content, social, and webinar tooling.

The revenue model is donation-driven. Primary income comes from individual donations (one-time and recurring) and annual membership adhesion, supplemented by corporate mécénat and CSR partnerships (e.g., Groupama Rhône-Alpes-Auvergne), merchandise sales, and legacy giving (legs, donations, assurance-vie). The association holds the IDEAS governance certification and the Don en Confiance label (renewed 2023/2026), which serve as trust markers for donors. Customer segments are horizontal and non-commercial: patients and families (primary), researchers and the scientific community, healthcare professionals, and donors/patrons. Distribution is multi-channel — digital (website, social, newsletter), event-driven (Balade du Lysosome, TeamLysosome sports challenges, gala evenings), regional antennas across France, and international reach via EURORDIS membership.

Name

Vaincre Les Maladies Lysosomales

Legal name

Vaincre les Maladies Lysosomales

Website

https://vml-asso.org

Company type

Private

Founded year

1990

Operating status

Operating

Headcount range

1–10 employees

Short description

Vaincre Les Maladies Lysosomales (VML) is a French non-profit patient association, founded in 1990, that supports approximately 2,000 patients with over 60 lysosomal storage diseases through information, family services, advocacy, and research funding.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy and Support Services

NAICS

Individual and Family Services (6241)

SIC

Services-Social Services (8300)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

Keywords

• Rare disease advocacy
• Patient association services
• Medical research funding
• Rare disease support
• Patient family assistance

Headquarters

HQ city

Massy

HQ country

France

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Donations and Membership: VML's primary revenue streams are donations from individuals (one-time and recurring) and membership fees (adhesion). Members pay annual dues to join the association, and individual donors contribute through the website, events, and online fundraising pages. The organization holds the Don en Confiance label, demonstrating transparent financial practices to sustain donor trust.
2. Corporate Mécénat and Partnerships: VML generates revenue through corporate sponsorship and patronage (mécénat) agreements with companies such as Groupama Rhône-Alpes-Auvergne. Companies engage with VML through CSR (RSE) programs, solidarity gifting (chocolates, events), and branded fundraising campaigns.
3. Merchandise Sales: The Boutique du Lysosome sells branded merchandise (apparel, accessories) through Hello Asso, generating revenue while promoting the association's identity and mission.
4. Legacies and Life Insurance: VML accepts legacy donations (legs, donations, assurance-vie/life insurance), providing a long-term revenue channel aligned with end-of-life giving practices common in French associations.

Go-to-market motion3 records

Distribution channels4 records

Marketing channels7 records

Core offering

Vaincre Les Maladies Lysosomales (VML) is a French non-profit patient association that supports individuals and families affected by lysosomal storage diseases through individualized accompaniment, family weekends, bereavement support, a helpline, and educational webinars. It also finances scientific and medical research on more than 60 lysosomal diseases via annual calls for projects, and advocates for patients' rights with French and European health authorities.

Product overview

Vaincre Les Maladies Lysosomales (VML) operates as a patient advocacy and support organization rather than a technology product company. Its services consist of member support programs (Espace Adhérent, F.A.R.E. service, Ligne Accueil Famille), educational platforms (Webinaires du Lysosome, Portail des Maladies Lysosomales), community-building initiatives (family weekends, La Forêt des Anges bereavement support), and fundraising programs (Lysosolidarité, Balade du Lysosome, TeamLysosome, La Boutique du Lysosome merchandise shop). The association also maintains a scientific recognition program (Les Clés du Lysosome) and finances research programs for over 60 lysosomal storage diseases. The organization has been mobilizing since 1990 and serves approximately 2,000 patients in France with a new diagnosis every three days.

Differentiator

Problem solved

Functional benefit

Brands

• Lysosome: Mascot and symbol of VML, representing the lysosome organelle central to lysosomal storage diseases.
• Service F.A.R.E.
• La Forêt des Anges
• Balade du Lysosome
• Lysosolidarité
• TeamLysosome
• Lyso-Gestes

Quantifiable outcome

• 2000 patients supported in France with 1 new diagnosis every 3 days
• +2 more outcomes

Segments4 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Five partnerships are on record, tiered minor and core.

• Groupama Rhône-Alpes-AuvergneminorGTM or Marketing PartnerGroupama Rhône-Alpes-Auvergne provides corporate patronage (mécénat) to VML, notably funding a sensory space project for patients and families. The partnership also includes solidarity chocolate campaigns where Groupama distributes VML-branded chocolates to employees and clients, generating funds and awareness.
• Team LysosomeminorGTM or Marketing PartnerTeam Lysosome is a network of athletes who adopt the Lysosome logo and participate in sporting events (marathons, endurance races) on behalf of VML, raising funds and visibility for the association through their athletic challenges.
• EURORDIS (Rare Diseases Europe)coreStrategic or Co-development PartnerVML is a member of EURORDIS, the European umbrella organization for rare disease patient associations. This membership provides VML with access to European advocacy networks, shared resources, participation in events like Rare Disease Day, and a platform to represent French lysosomal disease patients at the EU level.
• Alliance Maladie RarecoreStrategic or Co-development PartnerVML holds a seat on the National Council of Alliance Maladie Rare, the French national alliance for rare disease patient organizations. This strategic position enables VML to participate in national advocacy, policy discussions, and collaborative initiatives representing the rare disease patient community in France.
• Institut ImagineminorStrategic or Co-development PartnerInstitut Imagine in Paris hosts the annual Clés du Lysosome (Keys of the Lysosome) ceremony where VML recognizes outstanding researchers. The partnership highlights VML's commitment to supporting French and international research excellence in lysosomal diseases.

Scale indicators4 records

Expansion highlights6 records

Direct peers

• National MPS Society: US-based patient organization supporting individuals and families affected by MPS and related lysosomal storage diseases. Directly comparable to VML in mission (patient/family support, research funding, advocacy) and disease scope, but operates primarily in the United States rather than France.
• Cure Sanfilippo Foundation: US nonprofit dedicated to funding research and clinical trials for Sanfilippo Syndrome (MPS III). Highly comparable operating model to VML's research-funding arm but single-disease focused, and notable for pushing gene therapy translation — directly relevant to VML's stated focus on the upcoming MPS III gene therapy trials.
• Sanfilippo Children's Foundation: Australia-based nonprofit focused specifically on Sanfilippo Syndrome (MPS III), one of the most prominent lysosomal diseases in VML's portfolio. Shares the same community-led, donation-funded, research-granting model with concentrated emphasis on accelerating gene therapy trials toward clinical use.
• Fabry Support & Information Group: US nonprofit providing support, education, and research advocacy for patients and families affected by Fabry disease, another key lysosomal storage disease in VML's portfolio. Shares the same patient-community-led research-funding model.
• Acid Maltase Deficiency Association (AMDA): US patient association dedicated to Pompe disease (Glycogen Storage Disease Type II), one of the lysosomal diseases covered by VML. Operates with the same patient support, research funding, and community-building model that VML uses across its broader lysosomal portfolio.
• Vaincre la Mucoviscidose: French patient association supporting people affected by cystic fibrosis, with the same community-led, donation-funded, research-granting structure as VML. Highly comparable in scale, mission (rare genetic disease support + research funding), and use of events, regional antennas, and member portals to engage patients and donors in France.

Others

• EURORDIS (Rare Diseases Europe): European umbrella organization for rare disease patient associations; VML is a member. Functions as an enabling/ecosystem player across advocacy, policy, and patient engagement at the EU level, with a comparable mission to VML's advocacy pillar but operating across all rare diseases.
• Alliance Maladies Rares: French national umbrella coalition of more than 200 rare disease patient associations, of which VML holds a National Council seat. Operates as an enabling/ecosystem player — not a direct fundraiser or service provider for one disease — but is closely comparable in advocacy focus on French rare disease policy and patient rights.

Regional players

• Niemann-Pick UK (NPUK): UK-based charity supporting patients and families affected by Niemann-Pick diseases (also covered by VML). Closely comparable operating model — patient support, research grants, family events, advocacy — but operates primarily in the UK rather than France.

Broad incumbents

• AFM-Téléthon (Association Française contre les Myopathies): France's largest rare disease patient association and a leading nonprofit funder of genetic disease research via its annual Téléthon. Highly comparable operating model to VML (donation-funded, research-granting, patient support, advocacy) but operates at a national scale across all neuromuscular diseases rather than being specialized in lysosomal storage diseases.

Market position

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/user/assoVML
• Facebookfacebook.com/vaincrelesmaladieslysosomales
• Instagraminstagram.com/lysosome.vml
• LinkedInlinkedin.com/company/vaincre-les-maladies-lysosomales

Revenue estimate

Valuation estimate

Number of profiles

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Vaincre Les Maladies Lysosomales