Association Française du Syndrome de Rett

What Association Française du Syndrome de Rett does

The Association Française du Syndrome de Rett (AFSR) is a French non-profit patient advocacy association founded in 1988 by five families and recognized as being of public utility. It serves more than 700 member families affected by Rett Syndrome, the leading genetic cause of polyhandicap among girls in France, with approximately 50 new diagnoses per year. AFSR is structured around four statutory missions: supporting families, raising awareness of Rett Syndrome, funding medical research (cumulatively approximately 1,300,000 EUR since 1990, governed by a medical and scientific council of neuropediatricians, geneticists, researchers, and neurologists), and advocating for the recognition of polyhandicapped persons.

The association's service portfolio includes a telephone helpline staffed by a clinical psychologist, a closed Facebook discussion group active since 2010, monthly educational webinars, regional family meetings via a network of regional delegates, training stages (notably the three-day 'Stage Tous Chercheurs' in Marseille), subsidized family respite stays (Center Parcs, Bobos à la ferme), equipment loans (eye-tracking computers, sensory blankets), a Commission Matériel for specialized equipment financing, an independent disability advisor for administrative guidance (MDPH procedures), and annual events including the Journées Nationales du Syndrome de Rett (JNSR), Course des Héros, Marche des Filles Rett, and the Octobre Rett awareness month. Distribution is delivered through regional delegates, the website, online boutique, social media (Facebook, Instagram, LinkedIn, YouTube), and event-based channels.

Revenue is generated through annual membership dues from 700+ member families, individual and corporate donations (Blue Soft, Groupama, Rotary/Lions Clubs, partner associations such as Les Rêves de Lucie, SoeuRETTes, Pour Léonie), event-based fundraising bib and participation fees, online merchandise sales, and commercial partnerships (notably Alex Olivier's Opération Chocolats de Noël, which reverts 18% of sales to AFSR). AFSR is governed by a volunteer Board of Directors supported by a small operational team and has no external parent company or private-equity ownership. The association has been actively expanding scope to related syndromes (CDKL5, FOXG1) and engaging with European regulators, notably the EMA, on orphan-drug evaluations such as Daybue (trofinetide).

Name

Association Française du Syndrome de Rett

Legal name

Association Française du Syndrome de Rett

Website

https://afsr.fr

Company type

Private

Founded year

1988

Operating status

Operating

Headcount range

1–10 employees

Short description

AFSR is a French non-profit association founded in 1988 and recognized of public utility, supporting more than 700 families affected by Rett Syndrome through counseling, equipment loans, regional meetings, and research funding totaling approximately 1,300,000 EUR since 1990.

Ownership category

akta.pro rank

Product category

Patient advocacy and rare disease family support services

NAICS

Individual and Family Services (6241), Services for the Elderly and Persons with Disabilities (624120)

SIC

Services-Social Services (8300)

akta.pro primary industry

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

Keywords

• Rare disease advocacy
• Patient family support
• Rett syndrome research
• Polyhandicap awareness
• Disability administrative guidance

Headquarters

HQ city

Not specified

HQ country

France

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Membership dues: Annual membership fees from more than 700 member families provide the association with recurring, predictable revenue and formal representativeness.
2. Donations and charitable contributions: Individual and corporate donations fund research projects and operational activities. The association receives donations from individuals, partner associations (e.g., Les Rêves de Lucie, SoeuRETTes, Pour Léonie), companies (Blue Soft), and Rotary Clubs.
3. Merchandise and product sales: The AFSR boutique sells branded products and derivative items (e.g., during events, through the online shop) to generate revenue.
4. Event-based fundraising: Revenue is generated through participation fees for events such as the Marche des Filles Rett (5€ per bib), the Course des Héros, charity galas, solidarity walks, and the Opération Chocolats de Noël partnership (18% of chocolate sales reverted to AFSR).
5. Respite stay subsidies: Family respite stays (e.g., Center Parcs) are subsidized through partnerships, providing services partly funded by the association.

Pricing tiers

Go-to-market motion1 record

Distribution channels4 records

Marketing channels12 records

Core offering

AFSR is a parent-run non-profit association that supports families affected by Rett Syndrome through emotional and psychological support (including a psychologist-staffed telephone helpline), peer communities (closed Facebook group, regional family meetings), administrative and disability-procedure guidance (MDPH files), equipment loans (eye-tracking computers, sensory blankets), family respite stays, awareness campaigns (Octobre Rett, Marche des Filles Rett, JNSR), fundraising for and curation of medical research via a medical and scientific council, and policy advocacy for the recognition of polyhandicapped persons.

Product overview

Association Française du Syndrome de Rett (AFSR) is a patient advocacy and family support organization founded in 1988, not a technology product company. The association offers a range of support services including a telephone helpline, Facebook discussion groups, lending programs for eye-tracking computers and sensory blankets, webinars, training programs, regional family meetings, family retreats, respite assistance, equipment guidance, administrative counseling, and awareness events such as the Rett Syndrome National Days (JNSR) and October Rett campaign. AFSR also operates a boutique for merchandise and raises funds for research on Rett Syndrome. The organization does not offer a software product, platform, or technology service.

Differentiator

Problem solved

Functional benefit

Products and services

• Annual Family Membership Annual paid family membership granting access to all AFSR support services including the psychologist telephone helpline, closed Facebook group, regional meetings, equipment loans, administrative guidance, and the family respite stay program.
• Clinical Psychologist Telephone Helpline (Écoute téléphonique psychologue) Free-for-members weekly telephone psychological support service staffed by a clinical psychologist-psychotherapist for families and close relatives affected by Rett Syndrome.
• Eye-Tracking Computer Lending Program Lending of eye-tracking (oculaire) computer equipment to families and persons with Rett Syndrome to support non-verbal communication and computer-based interaction.
• Sensory Blanket Lending Program (Prêt de plaid sensoriel) Lending of sensory blankets to families for sensory regulation and comfort of persons with Rett Syndrome.
• Journées Nationales du Syndrome de Rett (JNSR) Annual Conference Annual national multi-day conference of AFSR open to families, medical/paramedical professionals and researchers, featuring expert presentations on Rett Syndrome and polyhandicap care, genetics, and research.
• Stage Tous Chercheurs Scientific Training Program A 3-day intensive scientific training program for AFSR members, run in partnership with Tous Chercheurs in Marseille, designed to help parents understand Rett Syndrome biology and current research advances.
• Administrative Guidance Service for Disability Procedures Personalized phone or videoconference advisory service delivered by an independent disability advisor to help families understand and navigate administrative procedures, including MDPH disability benefit filings.
• AFSR Family Respite Stays (Séjour familles) Group family leisure/respite stays for families with children affected by Rett Syndrome, co-organized with partners such as Bobos à la ferme and partially subsidized by AFSR.
• Regional Family Meetings (Rencontres régionales) In-person regional family gatherings organized by AFSR regional delegates in French regions, providing peer exchange, mutual support, and community-building for families affected by Rett Syndrome.
• Commission Matériel Equipment Funding Commission AFSR commission offering financial support to families for the purchase of specialized equipment related to Rett Syndrome care and daily living.
• Commission Obsèques Funeral Support Commission AFSR commission providing funeral-related support, guidance, and information to bereaved families following the death of a person with Rett Syndrome.
• Rett Syndrome Research Funding Program AFSR-run grant program that funds medical and scientific research projects on Rett Syndrome, with project selection and quality oversight provided by the AFSR Medical and Scientific Council composed of neuropediatricians, geneticists, researchers, and neurologists.
• AFSR Online Boutique (Merchandise) AFSR online boutique selling branded merchandise and derivative products (including event-related items such as running tee-shirts) as a fundraising channel.
• Course des Héros Charity Run Team AFSR charity team participation in the Course des Héros running event, enabling members and supporters to fundraise on behalf of the association through personal fundraising pages.
• Marche des Filles Rett Annual Solidarity March Annual solidarity walk/race organized by AFSR, held in Anthelupt and virtually, generating revenue through bib sales (5 EUR/15 EUR) with proceeds fully reverted to AFSR for Rett Syndrome support.
• AFSR Educational Webinar Series Monthly educational webinars run by AFSR on topics related to disability and Rett Syndrome, covering areas such as epilepsy treatment, research advances, and caregiving.

Quantifiable outcome

• Nearly 1,300,000 € funded for research since 1990
• +2 more outcomes

Named customers1 record

Segments3 records

Ideal customer profiles2 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.

• HoolminorGTM or Marketing PartnerHool is a crowdfunding platform that enables the purchase of gift cards, with a portion of each transaction going to AFSR as a donation.
• Alex Olivier / Initiatives ChocolatsminorGTM or Marketing PartnerEach year, AFSR partners with Alex Olivier chocolate maker for the 'Opération Chocolats de Noël', offering chocolates at preferential rates with 18% of each order reverted to AFSR.
• Tous ChercheurscoreStrategic or Co-development PartnerTous Chercheurs provides scientific training programs for AFSR members. The 'Stage Tous Chercheurs' is a 3-day intensive scientific training held in Marseille, helping parents understand Rett Syndrome biology and research advances.
• Bobos à la fermeminorStrategic or Co-development PartnerA partnership with 'Bobos à la ferme' enables AFSR to co-organize family respite stays, making it easier for families with Rett Syndrome-affected children to participate in therapeutic leisure breaks.
• UDAFminorImplementation/ SI/ Consulting PartnerNaïma Guerroumi, a volunteer from UDAF, provided support during the Hauts-de-France regional family gathering, assisting with activities.

Scale indicators6 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• Rett Syndrome Europe: European umbrella federation of national Rett Syndrome associations coordinating advocacy and research across multiple European countries. Directly comparable disease-specific mission with broader geographic scope than AFSR.
• Rett Syndrome Research Trust (RSRT): UK-based and US-based Rett Syndrome research and advocacy organization focused on funding curative research and supporting families. Most direct international peer given the identical disease focus and family-support + research-funding model.
• International Rett Syndrome Foundation (IRSF): US-based patient advocacy and research funding organization for Rett Syndrome, providing family support, professional education, and accelerating research. Directly comparable mission, model, and disease focus to AFSR at greater scale.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/channel/UCqJtjqXp3wsA2C2unrMtImg
• Facebookfacebook.com/AFSRett
• LinkedInlinkedin.com/company/afsrett
• Instagraminstagram.com/afsrett

Revenue estimate

Valuation estimate

Number of profiles

Profiles8 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 de Rett