Association Française du Syndrome d'Angelman

What Association Française du Syndrome d'Angelman does

The Association Française du Syndrome d'Angelman (AFSA) is a French non-profit patient association governed by association loi 1901, founded in 1996 to support families affected by Angelman Syndrome — a rare genetic disorder causing severe intellectual disability, epilepsy, motor impairment, and absence of speech. The organization serves two principal constituencies: families of persons with Angelman Syndrome (the core beneficiary group) and the medical, paramedical, and educational professionals who support them. AFSA delivers value through a portfolio of informational products — including the Livret d'accueil welcome booklet, AFSA-Actus newsletter, Guide de Scolarisation schooling guide, thematic dossiers, and 'Secret de Maël' — alongside a nationwide network of regional delegates and correspondents. The association operates two formal expert advisory bodies: a Medical and Scientific Council (CMS) chaired by neuropediatrician Sylviane Peudenier and a Paramedical and Educational Council (CPME) chaired by speech therapist Dominique Crunelle, with geneticist Anne Moncla on the CMS, ensuring clinically-grounded guidance to families and practitioners.

AFSA's business model is donation- and grant-funded rather than commercial. The association does not charge fees for its core services; revenue is derived from individual donations, membership contributions, charity events (concerts, sports events, charitable auctions such as the Angel Art auction with Aguttes in 2022), and corporate sponsorships from partners including Fondation Groupama pour la Santé, Enedis, Schneider Electric, and visibility-driven partnerships via Sébastien Loeb Racing and Volvo Trucks France. Nine-time World Rally Champion Sébastien Loeb serves as the official ambassador (parrain), providing high-profile awareness support. AFSA is a founding member of the Angelman Syndrome Alliance (ASA), a coalition of 15 patient associations across countries, and is a member of Eurordis (Rare Diseases Europe) and Alliance Maladies Rares, with additional involvement in the Collectif de Déficience Intellectuelle. In December 2020 ASA — of which AFSA is a member — formalized a partnership with the Angelman Syndrome Foundation (ASF) to create the International Angelman Syndrome Advisory Committee.

AFSA is not a technology company. Its operational platform consists of a multilingual website (French, English, German, Spanish, Italian, Arabic, Japanese, Chinese), an active Facebook presence, RSS feeds, email newsletters, and a body of downloadable publications hosted on its main site and a dedicated portal (livret-angelman-afsa.org). The association holds official agrément (approval) from the French Ministry of Social Affairs and Health, granted in 2017, certifying AFSA as a qualified health and social welfare organization. Governance is provided by volunteer administrators who are parents of children with Angelman Syndrome, supplemented by paid staff; the president is Denise Laporte. Annual programmatic outputs include the Scientific Research Bursaries cycle (2026 winners announced June 2026) and ongoing clinical-trial communications.

Name

Association Française du Syndrome d'Angelman

Legal name

Association Française du Syndrome d'Angelman

Website

https://angelman-afsa.org

Company type

Private

Founded year

1996

Operating status

Operating

Headcount range

1–10 employees

Short description

Association Française du Syndrome d'Angelman (AFSA) is a French non-profit association founded in 1996 supporting families affected by Angelman Syndrome via informational publications, regional delegates, expert medical councils, and community events, while funding research and advocating for patient rights.

Ownership category

akta.pro rank

Headquarters

HQ city

France

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: AFSA relies on donations from individuals and corporate partners, as well as membership fees from families and supporters. The association conducts regular fundraising campaigns including charity events, concerts, sports events, and partnerships with corporate sponsors.

Go-to-market motion1 record

Distribution channels1 record

Marketing channels5 records

Core offering

AFSA is a French non-profit patient association that supports families affected by Angelman Syndrome through informational publications (Livret d'accueil, AFSA-Actus newsletter, Guide de Scolarisation, thematic dossiers), training programs, regional delegate networks across France, scientific research grant funding, advocacy for patient rights, and annual awareness events including the International Angelman Syndrome Day.

Product overview

The Association Française du Syndrome d'Angelman (AFSA) is a non-profit patient association providing information, support, and resources for families affected by Angelman Syndrome. Rather than a technology product company, AFSA offers a portfolio of informational products including the Livret d'accueil (welcome booklet), newsletters (AFSA-Actus), educational guides (Guide de Scolarisation), thematic dossiers, and various communication supports. The organization focuses on patient support, awareness raising, and scientific research promotion rather than software or technology products.

Differentiator

Problem solved

Functional benefit

Products and services

• Livret d'accueil du syndrome d'Angelman

Named customers2 records

Segments2 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Eight partnerships are on record, tiered core, major, moderate and flagship.

• Angelman Syndrome Foundation (ASF)coreStrategic or Co-development Partner · 2 December 2020ASA (Angelman Syndrome Alliance, including AFSA) and ASF signed a partnership for the creation of the International Angelman Syndrome Advisory Committee to coordinate global efforts.
• Eurordis (Rare Diseases Europe)majorOthersAFSA is a member of Eurordis, the European organization representing rare disease patient organizations, providing international networking and advocacy support.
• Alliance Maladies RaresmajorOthersAFSA is a member of Alliance Maladies Rares, the French alliance of rare disease patient organizations, coordinating advocacy efforts at national level.
• Collectif de Déficience IntellectuellemoderateOthersAFSA participates in this collective focused on intellectual disability issues, contributing to broader advocacy for people with intellectual disabilities.
• Angelman Syndrome Alliance (ASA)coreStrategic or Co-development PartnerAFSA is a founding member of the Angelman Syndrome Alliance, a coalition of 15 countries' parent associations working together to fund research and raise awareness about Angelman Syndrome internationally.
• Sébastien LoebflagshipGTM or Marketing PartnerNine-time World Rally Champion Sébastien Loeb serves as the ambassador (Parrain) of AFSA, supporting awareness campaigns and fundraising efforts with high-profile visibility.
• Volvo Trucks FrancemajorGTM or Marketing PartnerPartnership through Sébastien Loeb Racing with Volvo Trucks France, including event sponsorships and visibility at sailing events like the Volvo Ocean Race.
• Tout pour le Mieux (company)moderateStrategic or Co-development PartnerCollaborated with AFSA and Fondation Groupama pour la Santé on an animation film featuring a character with Angelman Syndrome to raise public awareness about the condition.

Scale indicators3 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• NORD (National Organization for Rare Disorders): Largest US rare disease patient advocacy umbrella. Comparable mission and operating model (membership, research funding, policy advocacy) but at vastly greater scale and US scope; an incumbent reference point for what AFSA could evolve into at national level.
• AFM-Téléthon: France's dominant rare disease non-profit, focused primarily on neuromuscular diseases but operating at massive scale (Téléthon fundraising). Comparable as a French rare-disease advocacy/funding incumbent whose operating model represents a long-term scaling aspiration for AFSA.

Direct peers

• Foundation for Prader-Willi Research: US-based research-focused non-profit for Prader-Willi Syndrome, a related rare genetic neurodevelopmental disorder. Highly comparable structure: family-led patient advocacy, research grants, and clinical-trial engagement for a similarly sized rare genetic population.
• Unique - Rare Chromosome Disorders Support Group: UK-based patient support organization for people affected by rare chromosome disorders. Comparable as a small national patient-led non-profit producing information resources, peer support, and engaging with research for a rare-condition population.
• EURORDIS - Rare Diseases Europe: European non-profit alliance of rare disease patient organizations. AFSA is a member; comparable as a broader umbrella advocacy and policy organization for rare diseases, including the Angelman community AFSA represents.
• Angelman Syndrome Alliance (ASA): International consortium of 15 country-level Angelman Syndrome patient associations of which AFSA is a founding member. Directly comparable as a coalition peer pooling research funding and advocacy across borders.
• Alliance Maladies Rares: French national coalition of rare disease patient associations. AFSA is a member; directly comparable as a domestic umbrella advocacy organization addressing the same French policy and funding environment.
• Rett Syndrome Research Trust: UK/US non-profit driving research and clinical trials for Rett Syndrome, another rare neurodevelopmental disorder. Comparable mission, advocacy depth, and pharma-partnership orientation for a similarly small rare-disease population.
• Angelman Syndrome Foundation (ASF): US-based non-profit dedicated to Angelman Syndrome awareness, family support, and research funding. ASF is AFSA's closest direct peer: same condition, similar mission, and a co-partner in the International Angelman Syndrome Advisory Committee.

Others

• Orphanet: French-led international reference portal for rare diseases and orphan drugs. Comparable in disease space and partly ecosystem-adjacent (information provision for rare diseases), but operates as an INSERM-hosted database rather than a patient association.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• Facebookfacebook.com/timeline
• LinkedInlinkedin.com/company/association-fran%C3%A7aise-du-syndrome-d-angelman

Revenue estimate

Valuation estimate

Number of profiles

Profiles5 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Association Française du Syndrome d'Angelman