ARSLA

What ARSLA does

ARSLA (Association pour la Recherche sur la Sclérose Latérale Amyotrophique) is a French non-profit association founded in 1985 and recognized as being of public utility (reconnue d'utilité publique), dedicated to fighting Amyotrophic Lateral Sclerosis (ALS, or Charcot's disease). Headquartered at 111 Rue de Reuilly in Paris with a staff of 29, the organization mobilizes a network of approximately 500 active volunteers across France to serve roughly 4,000 ALS patients and caregivers annually with free services including a telephone listening line, psychological support, technical aid loans (eye-controlled tablets, reclining chairs, shower seats), social rights navigation, and end-of-life accompaniment. The association also publishes educational resources such as the quarterly Accolade magazine and the initial information booklet developed with FILSLAN.

The organization's research arm funds approximately €3 million annually across roughly 250 research projects, with the PULSE and MINE projects as flagship initiatives. In October 2025, ARSLA launched the Institut Charcot — the first French institute entirely dedicated to ALS research — uniting researchers, clinicians, patients and the association under a unified structure with an international Scientific Advisory Board chaired by Pr. Ammar Al-Chalabi. ARSLA has formed research partnerships with the UK MND Research Institute, Canadian and German teams, and most recently joined a July 2026 European alliance with the Transylvanian Institute of Neuroscience (TINS) and Intelimensa to explore brain-computer interface applications for ALS patients.

Commercially, ARSLA operates a donation-based revenue model. Income is diversified across individual donations (eligible for 66% French income tax deduction), corporate philanthropy (60% corporate deduction, including financial patronage, salary rounding, in-kind giving and event sponsorship), legacy bequests, event registration fees (e.g., €15 for the Défie la SLA connected race), the Ticket Gagnant national lottery, and branded merchandise. Go-to-market is community-led and event-driven, anchored by the annual month-long Éclats de Juin awareness campaign in June, complemented by celebrity ambassadors (Denis Brogniart, Éric Judor, Marine Lorphelin), pro-bono creative support from Fred & Farid Paris, and digital channels including a main donation portal, dedicated campaign microsite, and integrations with Strava, Garmin and Fitbit for peer-to-peer fundraising. The organization is governed by a Board of Directors under French nonprofit law with no parent entity and is GDPR-compliant.

Name

ARSLA

Legal name

Association pour la Recherche sur la Sclérose Latérale Amyotrophique

Website

https://arsla.org

Company type

Private

Founded year

1985

Operating status

Operating

Headcount range

11–50 employees

Short description

ARSLA is a French non-profit association founded in 1985 dedicated to fighting ALS (Charcot's disease) through free patient support services for 4,000+ persons annually, €3M in annual research funding across 250 projects, and the newly launched Institut Charcot research institute in France.

Ownership category

akta.pro rank

Product category

ALS Patient Advocacy and Research

NAICS

Voluntary Health Organizations (813212), Social Advocacy Organizations (8133), Grantmaking and Giving Services (8132)

SIC

Services-Social Services (8300), Services-Membership Organizations (8600)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

Keywords

• ALS research funding
• Patient support services
• Rare disease advocacy
• Charcot disease association
• Nonprofit healthcare

Headquarters

HQ city

Paris

HQ country

France

HQ region

Europe

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Individual Donations: Individual donors contribute one-time or recurring donations. French tax law provides 66% income tax deduction for individual donors, making donations cost-effective for supporters.
2. Corporate Philanthropy and Sponsorship: Companies engage through financial patronage, salary rounding programs, in-kind donations, product sharing arrangements, and event sponsorship. Tax deduction of 60% for corporate donations.
3. Event Fundraising: Registration fees for events like Défie la SLA (€15), ticket sales for Ticket Gagnant lottery, and proceeds from boutique merchandise sales.
4. Legacies and Donations: The association accepts legacy bequests, donations, and life insurance policies as long-term sustainable revenue streams.

Pricing tiers

Go-to-market motion3 records

Distribution channels6 records

Marketing channels7 records

Core offering

ARSLA is a French non-profit association founded in 1985 that fights ALS (Charcot disease) on three fronts: financing and accelerating research (including operating the Institut Charcot and funding ~250 research projects), supporting and accompanying patients and caregivers through free services such as psychological support, technical aid loans, and a listening helpline, and defending patient rights while raising public awareness via annual campaigns like Éclats de Juin. The organization raises funds primarily through individual donations, corporate philanthropy, event registration fees, lotteries, merchandise, and legacy gifts.

Product overview

ARSLA (Association pour la Recherche sur la Sclérose Latérale Amyotrophique) is a French non-profit association founded in 1985, recognized as being of public utility, dedicated to fighting ALS (Amyotrophic Lateral Sclerosis), also known as Charcot disease. The organization operates a multi-faceted portfolio consisting of: awareness campaigns including the annual Éclats de Juin national mobilization and the connected Défie la SLA race challenge; patient support services including a listening hotline, psychological support, technical aid lending, and the Kikoz resource platform; research funding through the Institut Charcot (the first French institute entirely dedicated to ALS research), the PULSE and MINE research projects, and the Appel à projets AGIR grant program; publications including the quarterly Accolade magazine and initial information booklet; and fundraising activities such as the Ticket Gagnant lottery and VAINCRE merchandise. The organization connects to fitness tracking apps (Strava, Garmin, Fitbit) for its Défie la SLA campaign and uses Helloasso for donation processing.

Differentiator

Problem solved

Functional benefit

Brands

• Institut Charcot: First French institute entirely dedicated to ALS research, launched in October 2025, bringing together researchers, clinicians, patients, and the association.
• Éclats de Juin
• Défie la SLA
• Revue Accolade

Products and services

• Institut Charcot The first French institute entirely dedicated to ALS research, uniting researchers, clinicians, patients, and associations under a Scientific Advisory Board chaired by Pr. Ammar Al-Chalabi to accelerate ALS research.
• Éclats de Juin Annual national ALS/Charcot disease awareness campaign held throughout June, including Défie la SLA connected race, 24h du Lac cycling event, solidarity events, VAINCRE t-shirt sales, and various fundraising activities.
• Défie la SLA Connected running/walking/cycling challenge where participants register (€15), create personal fundraising pages, track kilometers via Strava/Garmin/Fitbit, and collect donations for ALS research.
• Ticket Gagnant National solidarity lottery operated through tombola-arsla.org with over 70 prizes including trips, hotel stays, and gift vouchers, with proceeds supporting ARSLA's mission and research funding.
• Appel à projets AGIR Grant program supporting innovative initiatives to improve accompaniment, care, and quality of life for people living with ALS. Fourth edition launched in 2026.
• Revue Accolade Quarterly magazine published by ARSLA providing information about ALS research, patient stories, and association news, distributed to members and supporters.
• 24h du Lac Annual 24-hour cycling event held at Lac d'Annecy that raised €175,000 in 2025 for ALS research funding.
• VAINCRE T-shirt Campaign merchandise t-shirt with the word VAINCRE (Conquer) sold through the Helloasso online boutique as a symbol of mobilization, with 100% of profits going to research and patient support.
• Ligne d'écoute ARSLA Emotional support and listening hotline (01 58 30 58 57) for ALS patients and caregivers, providing psychological support throughout the disease journey.
• Prêt d'aides techniques

Quantifiable outcome

• 4,000 persons supported annually with free services
• +3 more outcomes

Named customers4 records

Segments4 records

Ideal customer profiles5 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration9 records

Partnerships

Ten partnerships are on record, tiered strategic, core, major and supporting.

• Transylvanian Institute of Neuroscience (TINS)strategicTechnology or Integration · 17 July 2026Part of European alliance announced July 2026 to accelerate ALS research and explore brain-computer interface (ICO) potential. Collaborates with ARSLA and Institut Charcot.
• IntelimensastrategicTechnology or Integration · 17 July 2026European alliance partner for ALS research and brain-computer interface development. Provides technological expertise for ICO solutions.
• Institut CharcotcoreStrategic or Co-development Partner · 6 October 2025First French institute entirely dedicated to ALS research. Founded by ARSLA in collaboration with researchers, clinicians, and patients. Unites research efforts that were previously dispersed. Features international Scientific Advisory Board chaired by Pr. Ammar Al-Chalabi. Requires €20 million to realize promising research.
• FILSLANcoreStrategic or Co-development PartnerFrench healthcare network/filière for motor neuron diseases. Collaborates with ARSLA on patient information and support services, including the initial information booklet for patients and caregivers.
• ACT4ALScoreStrategic or Co-development PartnerFrench research consortium collaborating with Institut Charcot and ARSLA on ALS research initiatives.
• UK MND Research InstitutemajorStrategic or Co-development PartnerInternational research partner collaborating with Institut Charcot on ALS research, providing cross-border scientific expertise.
• European ALS Research Teams (Canadian and German)majorStrategic or Co-development PartnerInternational research collaborations with Canadian and German research teams supporting the Institut Charcot's mission.
• Fred & Farid ParissupportingGTM or Marketing PartnerCreative advertising agency that pro bono created the 'Tant qu'il nous restera des forces' national campaign film, posters, and digital materials for ARSLA.
• Denis BrogniartsupportingGTM or Marketing PartnerTelevision presenter serves as master of ceremonies for ARSLA campaigns and national events. Close friend affected by ALS drives personal commitment.
• Pone (Guilhem Gallart)supportingGTM or Marketing PartnerMusic producer and member of Fonky Family, himself affected by ALS, composed the campaign music 'Can't Slow Down' using eye-tracking technology.

Scale indicators9 records

Recent moves7 records

Expansion highlights6 records

Regional players

• AFM-Téléthon: Major French nonprofit dedicated to neuromuscular diseases including ALS, operating the iconic Téléthon fundraising event and funding substantial genetic/rare-disease research — comparable French non-profit peer in disease space, scale, and event-driven fundraising model.
• EUpALS - European Association for ALS: European-level advocacy and coordination body for ALS associations across Europe; comparable because it partners with national ALS bodies (including ARSLA's peers like ALS France members) and shapes EU-level policy on motor neurone disease.

Direct peers

• The ALS Association: The leading US-based ALS disease-specific nonprofit, providing patient services, public policy advocacy, and research funding (over $120M annually); same mission model as ARSLA but at much greater scale, making it the most direct functional and structural peer.
• Robert Packard Center for ALS Research: US-based research consortium dedicated exclusively to ALS, analogous to Institut Charcot in its mission to accelerate ALS research via coordinated scientific programs; comparable in research-only focus and academic-industry-philanthropy tri-structure.
• ALS Canada: Canadian ALS-focused nonprofit delivering patient services and research funding; comparable structure to ARSLA with national scope and similar combined research/service proposition, plus a research arm analogous to Institut Charcot.
• MND Association (Motor Neurone Disease Association): UK national charity dedicated to motor neurone disease (the British equivalent diagnosis for ALS), funding research and supporting patients and families — direct peer in mission, disease focus, and combined service/research model.

Broad incumbents

• Association pour la Recherche sur le Cancer (ARC): French foundation dedicated exclusively to cancer research funding; comparable to ARSLA in its disease-specific research funding mandate and French non-profit structure, though more narrowly scoped to research than ARSLA's combined service+research model.
• Ligue contre le cancer: France's largest cancer-focused nonprofit, combining patient services, research funding, and large-scale national awareness campaigns; comparable in mission structure (patient + research + advocacy) and French non-profit operating model, scaled to a different disease vertical.

Others

• International Alliance of ALS/MND Associations: Global umbrella organization connecting national ALS/MND associations across 50+ countries including ARSLA's research partners; comparable as an ecosystem peer enabling access to international research collaboration and benchmarking for ARSLA's European alliance strategy.
• FILSLAN: French healthcare network (filière) for motor neuron diseases, co-founded with ARSLA and tasked with improving care pathways, professional training, and patient information; comparable as a French ecosystem peer and direct operational partner co-developing the initial information booklet.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/arsla75
• YouTubeyoutube.com/user/ARSLA75
• Facebookfacebook.com/ARSLA.asso
• LinkedInlinkedin.com/company/arsla
• Instagraminstagram.com/arsla_

Compliance3 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

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 ARSLA