Fondation Téléthon Action Suisse

What Fondation Téléthon Action Suisse does

Fondation Téléthon Action Suisse is a Swiss charitable foundation established in 1988 that mobilizes public donations to fund research into rare genetic diseases and provide social support to affected patients and families across Switzerland. The foundation operates a community-led, volunteer-driven fundraising model anchored by an annual Téléthon weekend held on the first weekend of December (the 39th edition scheduled for 4-5 December 2026), supplemented by year-round online donations, legacy giving, an e-commerce boutique, and an online personal fundraising portal (Ma Collecte / macollecte.telethon.ch). All funds raised in Switzerland remain in Switzerland and are allocated under a regulated 50/50 split — 50% to research (via FSRMM, the Fondation Suisse de Recherche sur les Maladies Musculaires) and 50% to social support (via ASRIMM in French-speaking Switzerland and MGR in Italian-speaking Switzerland/Ticino).

The foundation runs a thin technology layer optimized for charitable giving: an online donation form with preset tiers (25/50/100 CHF or custom amount), TWINT QR-code mobile payment integration, WhatsApp-shareable personal fundraising pages, and an e-commerce boutique selling branded merchandise (Caran d'Ache pens, Swiss-made knives, plush toys) plus the proprietary Mia illustrated children's book series (volumes 1-3 published 2023-2025, written by Sophie Evard and illustrated by Nicole Devals). Order fulfillment is outsourced to L'Eventail, a sheltered workshop in Lavigny that supports the foundation's social mission.

The organization operates with a lean coordination team of 1-10 staff split between its national headquarters in Yverdon-les-Bains (led by Cristelle Burlot) and a regional office in Lugano (led by Sonja Geninazzi), supplemented by thousands of volunteers, fire brigades, civil protection units, Lions Clubs, associations, and sports clubs that activate annually. The foundation is governed by a Board of Trustees chaired by President Eric Cochard with vice-presidents Jean-François Borgeaud, Claudio Del Don, and Claudia Ricci, and its accounts are supervised by the Swiss Federal Department of Home Affairs (EDI). Revenue is not publicly disclosed, but the Téléthon weekend is reported to generate over 80% of the foundation's annual financial resources. The foundation's research funding contributes to approximately 10 research projects annually and ~30 ongoing clinical trials in Switzerland focused on neuromuscular diseases such as spinal muscular atrophy, Duchenne muscular dystrophy, mitochondrial myopathies, and ALS.

Name

Fondation Téléthon Action Suisse

Legal name

Fondation Téléthon Action Suisse

Website

https://telethon.ch

Company type

Private

Founded year

1988

Operating status

Operating

Headcount range

1–10 employees

Short description

Fondation Téléthon Action Suisse is a Swiss charitable foundation established in 1988 that raises funds through an annual Téléthon weekend and year-round giving to support rare genetic disease research and provide social services to affected patients and families across Switzerland's three language regions.

Ownership category

akta.pro rank

Product category

Charitable Fundraising & Social Support

NAICS

Grantmaking Foundations (813211), Grantmaking and Giving Services (8132), Voluntary Health Organizations (813212), Religious, Grantmaking, Civic, Professional, and Similar Organizations (813)

akta.pro primary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

akta.pro secondary industry

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

Keywords

• Charitable fundraising services
• Rare disease research funding
• Nonprofit foundation services
• Philanthropic donation programs
• Genetic disease social support

Headquarters

HQ city

Yverdon-les-bains

HQ country

Switzerland

HQ region

Europe

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations (individual and corporate): The primary revenue stream consists of individual and corporate donations collected during the annual Téléthon weekend and throughout the year. The foundation offers preset donation amounts (25 CHF, 50 CHF, 100 CHF) and custom amounts. Donations can be made via credit card, PostCard, TWINT, and bank transfer. All funds raised in Switzerland remain in Switzerland.
2. E-commerce boutique (merchandise): The foundation sells branded merchandise including plush toys (Mia series, annual mascots), Swiss-made special-edition knives, Caran d'Ache pens, and grey scarves. Prices range from CHF 13 to CHF 40. Orders are fulfilled by L'Eventail sheltered workshop in Lavigny. Delivery takes approximately 5 working days.
3. Bequests and legacies: The foundation accepts legacy gifts and bequests, encouraging supporters to leave a lasting contribution to rare genetic disease research and social support.
4. Ma Collecte online fundraising: Individual supporters create personal fundraising pages on the macollecte.telethon.ch platform to collect donations from their network, multiplying the foundation's fundraising reach.

Pricing tiers

Go-to-market motion2 records

Distribution channels5 records

Marketing channels8 records

Core offering

Fondation Téléthon Action Suisse is a Swiss charitable foundation that mobilizes volunteers and partners to raise donations through the annual Téléthon weekend and year-round channels. Funds are allocated roughly 50% to rare genetic disease research (via FSRMM) and 50% to social support for patients and families (via ASRIMM in Romandie and MGR in Ticino). The foundation also operates an e-commerce boutique selling branded merchandise and an online personal fundraising platform (Ma Collecte) to extend its donor reach.

Differentiator

Problem solved

Functional benefit

Products and services

• Ma Collecte Online Fundraising Platform A self-serve online portal that lets individual supporters create personal donation collection pages on behalf of the foundation, enabling grassroots peer-to-peer fundraising across Switzerland.
• Online Donation Program A donation service accepting one-time and recurring individual contributions via credit card, PostCard, TWINT mobile payments, and bank transfer (PostFinance IBAN CH97 0900 0000 1000 0016 2).
• Téléthon E-commerce Boutique An online storefront offering branded merchandise (plush toys, Mia illustrated children's books, Swiss-made knives, Caran d'Ache pens, scarves) with order fulfillment handled by L'Eventail sheltered workshop in Lavigny.
• Mia Illustrated Children's Book Series An annual illustrated children's book series (volumes 1–3 as of 2025) featuring Mia, a girl in an electric wheelchair with a rare disease, addressing disability with humor and humanity, with proceeds supporting the foundation's mission.
• Legacy and Bequest Program A planned-giving service for supporters wishing to leave legacy contributions to rare genetic disease research and family support beyond their lifetime.
• Volunteer Event Organizer Service A support service for volunteer event organizers across Switzerland that supplies a free organizer toolkit, promotional materials (banners, posters), and TWINT QR-code payment infrastructure to host local Téléthon fundraising events.

Quantifiable outcome

• 50% of donations to research, 50% to social support (±5%)
• +3 more outcomes

Named customers5 records

Segments1 record

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature2 records

Partnerships

17 partnerships are on record, tiered core, major, media, supporting, operational and minor.

• FSRMM (Fondation Suisse de Recherche sur les Maladies Musculaires)coreStrategic or Co-development Partner · 1 January 1988FSRMM is the primary research beneficiary of Téléthon funds. The foundation finances approximately 10 research projects per year through FSRMM, supporting researchers in Geneva, Basel, Lugano, Zürich, and Lausanne working on neuromuscular diseases, gene therapy, and cell therapy. FSRMM also awards scholarships to doctoral researchers in muscle disease research. The foundation's accounts are regulated by the Swiss Federal Department of Home Affairs (EDI).
• ASRIMM (Association Suisse Romande Intervenant contre les Maladies Neuromusculaires)coreStrategic or Co-development PartnerASRIMM is the foundation's primary social support beneficiary in French-speaking Switzerland. It provides guidance, counseling, administrative support, financial assistance, holiday camps, and information days for patients and families affected by neuromuscular diseases.
• MGR (Associazione Malattie Genetiche Rare Svizzera Italiana)coreStrategic or Co-development PartnerMGR is the foundation's social support beneficiary in Italian-speaking Switzerland (Ticino). It provides counseling, accompaniment, information, financial assistance, and holiday camps for patients and families affected by rare genetic diseases. Claudio Del Don, president of MGR's steering committee, serves as vice-president of the Téléthon foundation board.
• Forvis MazarsmajorOthersForvis Mazars is listed as a main/principal partner of the foundation, providing audit and accounting services. As a major partner, Forvis Mazars supports the foundation's financial integrity and governance.
• SwisscommediaGTM or Marketing PartnerSwisscom is listed as a media partner, providing promotional support and visibility for Téléthon campaigns across Swiss media channels.
• Matthieu SpohnsupportingGTM or Marketing PartnerMatthieu Spohn is listed as a supporting partner of the foundation, providing promotional or operational support.
• RFJ (RadioFJ)mediaGTM or Marketing PartnerRFJ is a media partner providing radio coverage of Téléthon events in the French-speaking Swiss region.
• RTN (Radio Télévision Neuchâtel)mediaGTM or Marketing PartnerRTN is a media partner providing radio and TV coverage of Téléthon activities in the Neuchâtel region.
• Rhône FMmediaGTM or Marketing PartnerRhône FM is a media partner providing radio coverage for Téléthon in the Valais/Wallis region.
• radioFRmediaGTM or Marketing PartnerradioFR is a media partner providing radio coverage of Téléthon activities.
• LFM La radiomediaGTM or Marketing PartnerLFM La radio is a media partner in French-speaking Switzerland supporting Téléthon visibility.
• La TelemediaGTM or Marketing PartnerLa Tele is a regional television partner in French-speaking Switzerland broadcasting Téléthon events and campaigns.
• PiramediamediaGTM or Marketing PartnerPiramedia is listed as a media partner supporting Téléthon communications.
• upcmediaGTM or Marketing Partnerupc (now Sunrise) is listed as a media partner providing promotional support for Téléthon.
• L'Eventail ( sheltered workshop, Lavigny)operationalImplementation/ SI/ Consulting PartnerL'Eventail is a sheltered workshop in Lavigny, Switzerland, that processes and ships boutique orders for the Téléthon. This partnership supports the foundation's social mission by providing employment to people with disabilities.
• SIS 6/12minorOthersSIS 6/12 is listed as the organizer of a public open day event for families on 22 August 2026 in Courrendlin (JU), hosted at the local fire station.
• AFM-Téléthon (France)supportingStrategic or Co-development PartnerAFM-Téléthon is the French counterpart organization that developed the Téléthon model. Téléthon Action Suisse collaborates with AFM-Téléthon by sharing practical information sheets on neuromuscular diseases and research resources, leveraging the French organization's extensive knowledge base.

Scale indicators6 records

Recent moves6 records

Expansion highlights4 records

Direct peers

• AFM-Téléthon: The French parent organization of the global Téléthon model. AFM-Téléthon is the direct counterpart and named strategic partner of Fondation Téléthon Action Suisse, sharing research resources, patient information sheets, and clinical expertise on neuromuscular diseases. It is the originator of the Téléthon concept that the Swiss foundation replicates.
• Fondazione Telethon (Italy): The Italian national Téléthon foundation, also operating under the Téléthon model for rare genetic diseases. Highly comparable in scope, mission, and annual event structure, with similar funding of research and patient support.
• FSRMM (Fondation Suisse de Recherche sur les Maladies Musculaires): The Swiss Foundation for Research on Muscular Diseases is the primary research grant recipient of Fondation Téléthon Action Suisse. Highly comparable in mission (rare neuromuscular disease research funding) and operates as a grantmaking foundation in Switzerland.
• ASRIMM (Association Suisse Romande Intervenant contre les Maladies Neuromusculaires): The patient support organization funded by Fondation Téléthon Action Suisse in French-speaking Switzerland. Highly comparable mission — supporting neuromuscular disease patients and families — and operates as a sister organization within the Swiss rare-disease ecosystem.

Broad incumbents

• Muscular Dystrophy Association (MDA): The largest US voluntary health organization focused on neuromuscular diseases. MDA operates a comparable model of funding research and providing patient services, with broader national reach and a more diversified portfolio of disease areas than the Swiss foundation.
• EURORDIS - Rare Diseases Europe: The European umbrella organization for rare disease patient organizations. Operates at a pan-European level with policy advocacy focus; comparable in mission alignment with the Swiss foundation's rare-disease advocacy work and SMA neonatal screening outcomes.
• National Organization for Rare Disorders (NORD): The US national umbrella organization for rare diseases, providing advocacy, research funding, and patient support. Comparable mission breadth across rare diseases and similar structure as a grantmaking and patient-services foundation.

Emerging players

• Cure SMA: A US-focused nonprofit driving research and advocacy for spinal muscular atrophy — one of the specific conditions the Swiss foundation funds research on. Comparable in disease-specific focus, patient advocacy, and research grantmaking model.
• Parent Project Muscular Dystrophy: A US nonprofit focused specifically on Duchenne muscular dystrophy — one of the disease areas funded by FSRMM via Téléthon Suisse. Comparable as a disease-specific patient advocacy and research funding organization.

Regional players

• ProRaris (Alliance Maladies Rares Suisse): The Swiss national alliance for rare disease patient organizations. Directly comparable in geographic scope and rare-disease mission, functioning as an umbrella organization within the same Swiss ecosystem as Fondation Téléthon Action Suisse.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks5 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/channel/UCUCPza0qtq5OCE9KGdBE7xQ
• Facebookfacebook.com/telethonsuisse
• Instagraminstagram.com/telethon_si

Revenue estimate

Valuation estimate

Number of profiles

Profiles11 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Fondation Téléthon Action Suisse