What toll holdings ltd does

AFSED (Association Française des Syndromes d'Ehlers-Danlos) is a French nonprofit patient association founded in February 1997 and governed under French Loi 1901 law, headquartered at 67 rue Jules Lecesne, 76600 Le Havre. It is the reference French patient organization for Ehlers-Danlos Syndromes (EDS), a group of rare genetic connective-tissue disorders. The association is led by President Marie-Noëlle Gaveau with a volunteer Board of Directors and a Scientific Council, and its primary constituencies are EDS patients, their families, and the medical professionals who treat them. AFSED does not operate technology products; its core functions are patient support, medical information dissemination, therapeutic education, and medical research funding for all EDS subtypes.

The organization's service portfolio includes a quarterly journal (SED l'INFO), monthly email newsletters, a HONcode-certified website (afsed.com), regional meetings, an annual medical day in Paris, and the PrEduSED therapeutic patient education program for hypermobility-type EDS delivered at Clinique des Massues in Lyon. AFSED distributes emergency cards for vascular EDS patients, European patient passports, technical information sheets, and school guides. It co-funds medical research via annual calls for proposals (e.g., 126,620 euros pledged in 2018) and participates in research cohorts including RaDiCo-SED vasculaire. The association is formally integrated into France's national rare-disease infrastructure through Alliance Maladies Rares, FAVA-Multi, Maladies Rares Info Service, and three national reference centers (HEGP, Hôpital Raymond Poincaré Garches, Hôpital Necker-Enfants-Malades), as well as European Reference Networks VASCern and ReCOnnet and EURORDIS.

AFSED's revenue model is a mix of individual membership dues (30 euros/year, plus an optional 5 euros for the journal), individual and corporate donations, fundraising events including Téléthon solidarity walks and GROUPAMA partnerships, and pass-through research grants. Strategic financial partners include Fondation ROCHE, GROUPAMA, AFLAR, and AFM-Téléthon. Distribution is direct to members and through regional events and partner networks, with no commercial resellers. The association holds HONcode certification, an Orphanet listing, and a 2015 Label du droit des patients award recognizing its patient-centered VIVAMARE application.

Name

toll holdings ltd

Legal name

AFSED - Association Française des Syndromes d'Ehlers-Danlos

Website

https://afsed.com

Company type

Private

Founded year

1997

Operating status

Operating

Short description

AFSED is the French reference nonprofit patient association for Ehlers-Danlos Syndromes, founded 1997, supporting patients and families across France through information, therapeutic education, regional events, and medical research funding, in partnership with national reference centers and European Reference Networks.

Ownership category

akta.pro rank

Headquarters

HQ city

Le Havre

HQ country

France

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Others, Personnel, Operations

Revenue model

1. Membership fees: Annual membership fees of 30 euros per year providing access to all association activities, manifestations, and publications including the journal SED l'INFO (with additional 5 euros for the journal)
2. Donations and fundraising: Donations from individuals and organizations; fundraising events including solidarity walks, charity sales, and participation in Téléthon
3. Research project funding: Funding for medical research projects up to 60,000 euros per project through annual calls for proposals

Pricing tiers

Go-to-market motion1 record

Distribution channels3 records

Marketing channels7 records

Core offering

AFSED is a French nonprofit patient association that supports individuals and families affected by Ehlers-Danlos Syndromes through membership services, therapeutic education programs (PrEduSED), annual medical days, a quarterly journal (SED l'INFO), emergency cards for vascular EDS patients, and a national helpline. The association funds medical research projects via annual calls for proposals and raises funds through memberships, donations, and solidarity events including Téléthon.

Differentiator

Problem solved

Functional benefit

Products and services

• Annual Membership Annual membership open to patients, families, and supporters of the Association Française des Syndromes d'Ehlers-Danlos, providing access to all association activities, events, and publications for a fee of 30 euros per year (plus 5 euros for the quarterly journal).
• PrEduSED Therapeutic Education Program Week-long therapeutic patient education (Education Thérapeutique du Patient) program at Clinique des Massues in Lyon, teaching hypermobility-type EDS patients to manage their disease, pain, and daily life through structured sessions held several times per year.
• Emergency Cards for Vascular EDS Patients Urgency cards distributed to patients with vascular EDS, designed to inform emergency medical personnel of the patient's specific condition and care requirements to ensure appropriate emergency response.
• Quarterly Journal SED l'INFO Quarterly journal providing medical articles, patient stories, association news, and research updates to AFSED members and subscribers.
• Annual Research Funding Calls for Projects Annual calls for proposals funding medical research projects on Ehlers-Danlos Syndromes, with grants of up to 60,000 euros per project to support clinical and basic science research initiatives.
• Donations and Fundraising Campaigns Donation and fundraising programs including solidarity walks (Randoraid de la Loire, GROUPAMA walks in Normandy and Pays de Loire), charity sales, and annual Téléthon participation to fund AFSED's operations and research.
• Patient Helpline and Reference Center Navigation Phone helpline (0820 20 37 33) and reference center navigation services connecting EDS patients and families with specialized care providers such as HEGP, Necker-Enfants-Malades, and Hôpital Raymond Poincaré.
• Annual Medical Day Conference Annual gathering in Paris bringing together patients, families, and medical professionals with expert presentations and workshops, typically held in November each year.

Quantifiable outcome

• Reduced diagnostic delay through medical professional training and awareness programs
• +1 more outcomes

Named customers4 records

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Eleven partnerships are on record, tiered core and major.

• Alliance Maladies Rares (Rare Diseases Alliance)coreStrategic or Co-development PartnerAFSED is a member of the Alliance Maladies Rares, which brings together rare disease organizations in France. This affiliation provides national visibility, policy advocacy, and connection to the broader rare disease community.
• EURORDIScoreStrategic or Co-development PartnerAFSED is affiliated with EURORDIS, the European organization bringing together rare disease associations across Europe. Enables participation in European policy initiatives and cross-border research.
• European Reference Network (ERN) VASCerncoreStrategic or Co-development PartnerAFSED participates in VASCern, the European Reference Network for rare vascular diseases, connecting French reference centers with European centers of excellence for vascular EDS.
• European Reference Network (ERN) ReCOnnetcoreStrategic or Co-development PartnerAFSED participates in ReCOnnet, the ERN for connective tissue and musculoskeletal disorders, supporting care for non-vascular EDS types.
• FAVA-MulticoreStrategic or Co-development PartnerAFSED is part of FAVA-Multi, a filiere bringing together Reference Centers, competence centers and patient associations for rare vascular diseases, coordinating care pathways across France.
• Maladies Rares Info ServicemajorStrategic or Co-development PartnerAFSED directs patients to Maladies Rares Info Service (tel: 01.56.53.81.36) for general rare disease information, providing a national resource for patients and families.
• Centre de Référence des Maladies Vasculaires Rares (HEGP)coreStrategic or Co-development PartnerNational Reference Center for Rare Vascular Diseases at Hôpital Européen Georges Pompidou, Paris, directed by Pr Xavier Jeunemaitre. AFSED collaborates on research, patient support, and PNDS development for vascular EDS.
• Centre de référence des syndromes d'Ehlers-Danlos non vasculaires (Garches)coreStrategic or Co-development PartnerReference center for non-vascular EDS at Hôpital Raymond Poincaré, Garches, under Dr Karelle Bénistan. Provides specialized care for classical and hypermobility EDS types.
• Hôpital Necker-Enfants-Malades (Non-vascular EDS children)coreStrategic or Co-development PartnerPediatric reference center under Pr Valérie Cormier-Daire for children with non-vascular EDS, part of the national care network.
• AFM-TéléthonmajorStrategic or Co-development PartnerAFSED co-organizes symposia with AFM-Téléthon, such as the Interface Muscle-tissu conjonctif symposium held in Lyon in March 2016.
• OrphanetmajorStrategic or Co-development PartnerAFSED is listed on Orphanet, the European portal for rare disease information, providing visibility and referral pathways for patients seeking specialized care.

Scale indicators4 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• NORD - National Organization for Rare Disorders: US umbrella organization for rare disease patient associations. Comparable in mission and structure to AFSED's relationship with Alliance Maladies Rares, providing advocacy, research funding, and patient resources at national scale.
• EURORDIS - Rare Diseases Europe: European umbrella organization for rare disease patient associations, of which AFSED is a member. Sets pan-European policy, runs Rare Disease Day, and coordinates patient advocacy across member associations including AFSED.
• AFM-Téléthon: Major French rare disease nonprofit running annual Téléthon fundraising and funding neuromuscular disease research. AFSED co-organizes symposia with AFM-Téléthon; comparable scale and French rare-disease nonprofit model.
• Alliance Maladies Rares: French national alliance of rare disease patient associations, of which AFSED is a member. Provides policy advocacy, training, and shared services to member organizations including AFSED.

Others

• Orphanet: European reference portal for rare diseases and orphan drugs, on which AFSED is listed. Acts as the directory and information backbone connecting EDS patient associations to clinicians and researchers worldwide.

Direct peers

• The Ehlers-Danlos Society: Global patient organization for all EDS types, headquartered in the US, running international research, education, and the global EDS ECHO program. Directly comparable mission and scope to AFSED, but operating internationally rather than nationally.
• Ehlers-Danlos Support UK: UK-based membership charity for EDS patients and families, providing helpline, information resources, and funding research. Closest national-association peer to AFSED in terms of patient support, fundraising, and member services model.

Regional players

• Deutsche Ehlers-Danlos Initiative e.V. German national EDS patient association providing member support, information, and local events. Directly comparable role to AFSED in a neighboring country with similar healthcare system structure.

Market position

Weaknesses4 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• LinkedInlinkedin.com/company/afsed

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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