Association Ouvrir Les Yeux
Association Ouvrir Les Yeux is a French non-profit (founded 2000, Lens) that serves as the national reference patient association for Hereditary Optical Neuropathies, supporting NOH patients, families, carriers, and youth through helplines, virtual workshops, annual conferences, and co-piloted research.
- Company typePrivate
- Founded2000
- HeadquartersLens, France
- Headcount1–10
- GTM typeB2C
- OfferingServices
What Association Ouvrir Les Yeux does
Association Ouvrir Les Yeux (OLY) is a French non-profit association registered under loi 1901, founded in 2000 and headquartered in Lens, Hauts-de-France. It is the national reference patient association for Hereditary Optical Neuropathies (NOH), a group of rare mitochondrial diseases including Leber Hereditary Optic Neuropathy (NOHL) and Kjer disease, which in France affect approximately 150 new people per year. OLY serves four primary beneficiary segments: NOH patients, their families and carers, asymptomatic healthy carriers of NOH mutations, and young people with NOH. Its core service offerings include a free Accueil, Information et Orientation helpline (24/7 answering machine), members-only Ateliers Connectés virtual workshops with researchers and clinicians, informal Apér'OLY community meetups, the annual Journées de Partage scientific conference in Paris (~50 participants), disability compensation guidance, and a Pôle Jeunesse program. The association is unique among French patient organizations in co-piloting a major research program (EPICENTRE) with Inserm, CHU de Toulouse, CHU de Bordeaux, CERPPS, and ToNIC, investigating mental health comorbidities in NOHL.
The association's technology stack is a WordPress-based accessible website with high-contrast color modes (yellow/black, white/black, yellow/blue, white/red, black/white), supporting French and English. Operational tooling includes HelloAsso for donations and membership processing, Brevo for newsletter marketing, MailPoet for member email communications, Zoom for virtual events, Trello for internal task management, Google Analytics (with IP anonymization) and Tarteaucitron.js for cookie consent. For the EPICENTRE research project, OLY uses RGPD-certified AI software to transcribe and analyze patient voice testimonies collected via a dedicated phone line. OLY is a member of EURORDIS-Rare Diseases Europe (since 2017) and of the Filière Nationale de Santé BRAIN-TEAM, and holds ESUS (Entreprise Solitaire d'Utilité Sociale) accreditation granted by the Préfet du Pas-de-Calais in July 2025.
OLY's business model is non-commercial and donor-funded. Revenue streams include individual donations (online via HelloAsso and by check), annual membership fees, legacy bequests, corporate patronage (notably CHIESI, the commercializer of Raxone/idebenone, and Fondation Groupama), a share of the apprenticeship tax (taxe d'apprentissage), and merchandise sales through the association's online boutique. The association is volunteer-led with approximately 8 named personnel (President Maryse Leleu, Secretary Florence Bricout, Community Manager Mathieu, medical delegate Marie-France Norre, and 8+ regional antenna managers), supported by an unpaid volunteer base that includes NOH patients themselves. No revenue figure is disclosed. The organization operates a national footprint with regional antennas in at least 8 French regions and has expanded into European-level collaboration through the Erasmus+ Open Up consortium.
Association Ouvrir Les Yeux firmographics
Firmographics- Name
- Association Ouvrir Les Yeux
- Legal name
- OUVRIR LES YEUX
- Website
- https://ouvrirlesyeux.org
- Company type
- Private
- Founded year
- 2000
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- Association Ouvrir Les Yeux is a French non-profit (founded 2000, Lens) that serves as the national reference patient association for Hereditary Optical Neuropathies, supporting NOH patients, families, carriers, and youth through helplines, virtual workshops, annual conferences, and co-piloted research.
- Ownership category
- akta.pro rank
Association Ouvrir Les Yeux industry classification
Industry- Product category
- Rare Disease Patient Support Services
- NAICS
- Social Assistance (624), Other Individual and Family Services (62419)
- 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
- Non-Communicable Diseases (NCDs) & Mental Health Programs (BPADAIAK)
Keywords
Where Association Ouvrir Les Yeux is headquartered
LocationHeadquarters
- HQ city
- Lens
- HQ country
- France
- HQ region
- Europe
Offices1 record
Markets served
Association Ouvrir Les Yeux business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Technology or R&D, Others
Revenue model
- Membership Fees (Adhésion): Annual membership fees support the association's operations. Members gain access to exclusive services including Ateliers Connectés, voting rights at Assemblées Générales, and priority participation in events.
- Donations (Dons): Individual donations from the public, collected online via HelloAsso (secure 100% digital donation) and by check. The association states it lives essentially on the generosity of the public.
- Legacy Bequests (Legs): The association accepts legacy bequests as a form of long-term financial support.
- Corporate Patronage (Mécénat): Corporate sponsorship from companies such as CHIESI (commercializing Raxone®) and Fondation Groupama. CHIESI notably organized the Course des Héros 2025 in honor of the association.
- Apprenticeship Tax (Taxe d'apprentissage): The association receives a portion of companies' apprenticeship tax contributions.
- Shop / Merchandise: Sale of association merchandise (boutique) including calendars (e.g., Rugby Club de Compiègne calendar), badges, and other items to raise funds.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Subscription | Annual | Annual membership (Adhésion) |
Go-to-market motion3 records
Distribution channels5 records
Marketing channels14 records
Association Ouvrir Les Yeux product offering
Product offeringCore offering
Association Ouvrir Les Yeux is a French nonprofit patient association that provides free information, orientation, and support services for people affected by Hereditary Optical Neuropathies (NOH), including Leber and Kjer diseases. Its offerings include virtual workshops (Ateliers Connectés), community meetups (Apér'OLY), an annual scientific and patient conference (Journées de Partage), regional antenna support across France, and participation in the participatory EPICENTRE research program. Services are delivered to patients, families, healthy carriers, and young people affected by NOH, with funding coming from donations, membership fees, and corporate patronage.
Product overview
Association Ouvrir Les Yeux is a non-profit patient association offering a comprehensive support ecosystem for people affected by Hereditary Optic Neuropathies (NOH), including Leber and Kjer diseases. The core offerings include: (1) Ateliers Connectés - virtual expert workshops; (2) Apér'OLY - community meetups; (3) the EPICENTRE participatory research program; (4) annual Journées de Partage conferences; (5) an Accueil, Information et Orientation Service for patient support; and (6) advocacy services including Lumevoq® support. The association's digital services are powered by HelloAsso for membership/donations, Brevo/MailPoet for newsletters, and Zoom for virtual events.
Differentiator
Problem solved
Functional benefit
Products and services
- Annual Membership (Adhésion) Paid annual subscription granting voting rights at Assemblées Générales, exclusive access to Ateliers Connectés workshops, priority participation in events, and member-only communications. Open to patients, families, carriers, and supporters of the NOH community in France.
- Ateliers Connectés (Connected Workshops) Virtual Zoom-based workshops connecting NOH patients with researchers, neuro-ophthalmologists, rehabilitation specialists, and disability experts. Topics include research updates, genetic therapy, disability compensation, and environmental risk factors. Exclusive to association members.
- Apér'OLY (Virtual Community Meetups) Virtual informal gatherings open to all (members and non-members) for peer support, experience sharing, and community building among NOH patients and families. Aimed at combating isolation through regular video-conference meetings.
- Journées de Partage (Annual Sharing Days) Annual two-day in-person event in Paris combining the Assemblée Générale, scientific conferences with researchers and physicians, diagnosis announcement workshops, patient testimonials, and social activities. Nearly 50 participants attended the 2025 edition.
- Accueil, Information et Orientation Service Free service providing listening, reliable information, and appropriate support orientation for families affected by Hereditary Optical Neuropathies. Includes a 24H/24 telephone answering service staffed by visually impaired volunteers.
- Association Shop (Boutique) Online shop selling association merchandise including solidarity calendars (e.g., Rugby Club de Compiègne calendar), badges, and other items to raise funds for NOH research.
- Lumevoq Advocacy Service Ongoing advocacy and information service supporting NOHL patients regarding the gene therapy treatment Lumevoq® developed by GenSight, including updates on clinical trials, access to treatment, and disability compensation navigation.
Quantifiable outcome
- Nearly 50 participants at annual Journées de Partage conferences with researchers and physicians
- +2 more outcomes
Companies that use Association Ouvrir Les Yeux
Customer profileNamed customers4 records
Segments5 records
Ideal customer profiles5 records
Association Ouvrir Les Yeux technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Integration9 records
AI capability3 records
Association Ouvrir Les Yeux partnerships and signals
Strategic signalPartnerships
17 partnerships are on record, tiered core and minor.
- CHU de Toulouse (Purpan)coreCHU de Toulouse co-organizes with OLY the EPICENTRE participatory research day on June 15, 2026, on mental health in NOHL, in partnership with CERPPS and ToNIC laboratories.
- CERPPS (Centre d'Études et de Recherche en Psychopathologie et Santé) — Université de Toulouse Jean JaurèscoreCERPPS is a co-partner of the EPICENTRE research program, contributing expertise in psychopathology and psychology to study mental health comorbidities in NOHL patients and carriers.
- ToNIC (Toulouse Neuroimaging Center) — Inserm / Université de ToulousecoreToNIC contributes neuroimaging (MRI) expertise to the EPICENTRE study, investigating how the brain adapts to NOHL and the biological bases of mental health comorbidities.
- Inserm (Institut national de la santé et de la recherche médicale)coreInserm co-finances and recognizes the EPICENTRE project through its Sciences et Société department. The association OLY is a full partner of the EPICENTRE program from its inception, a notable distinction for a patient organization.
- Lions Club (Javene)minorLions Club mobilized to support the solidarité loto on November 17, 2024 in Javene, Bretagne, organized by Fondation Groupama for OLY's benefit.
- CHU de Bordeaux / Centre national de référence des maladies rares de BordeauxcoreCHU de Bordeaux is a partner in the EPICENTRE research program, contributing to the study of visual impairment and mental health in NOHL.
- Boutique des Sciences — Université de ToulouseminorThe Boutique des Sciences supports participatory science projects, contributing to the EPICENTRE initiative's societal impact framework.
- Filière Nationale de Santé BRAIN-TEAMminorBRAIN-TEAM is the national healthcare network for rare neurological diseases. OLY participates in the AIDAN program (Accompagnement Interdisciplinaire Des Aidants dans les maladies Neurologiques rares) for caregivers of people with rare neurological conditions.
- Stade Français Squash SectionminorThe Stade Français squash section partnered with OLY to offer Discovery & Initiation sessions in squash and handisquash for people with visual, hearing, or other disabilities on December 10, 2023 in Paris.
- La Vie ActivecoreLa Vie Active co-organizes the Challenge LVA-OLY, a 10-day national athletic challenge raising funds for NOH research. La Vie Active and OLY collaborate on youth accessibility projects, and La Vie Active pilots the Erasmus+ Open Up project with OLY as a partner.
- Erasmus+ Open Up Consortium (La Vie Active + multiple European partners)coreOLY is a partner in the Erasmus+ Open Up project (co-financed by the EU Erasmus+ program), led by La Vie Active. The project involves 6+ European partners and aims to improve reception and support of young people with visual impairments or carriers of visual impairment conditions.
- EURORDIS-Rare Diseases EuropecoreSince 2017, OLY has been a member of EURORDIS-Rare Diseases Europe, a non-profit alliance representing over 900 patient associations from more than 73 countries. This membership connects OLY to the global rare disease community and provides advocacy leverage at the European level.
- Les Yaouankis An Treou (Bretagne)minorA Breton association that organizes an annual summer walk in Trévou Tréguignec to support OLY, running since 2013. Led by Magali and Mickaël Balcou, regional antenna managers.
- Alliance Maladies RarescoreOLY participates in the annual Marche des Maladies Rares organized by Alliance Maladies Rares as part of the Téléthon, marching under the NOH banner and appearing on France Télévisions.
- Rotary Club Lens – LiévinminorOrganized a 'Repas dans le noir' (dinner in the dark) event on October 10, 2017 to raise awareness about visual impairment and support OLY.
- SENSGENEminorSENSGENE is a rare sensory disease healthcare network. OLY participates in their annual association day, coordinating with professionals to improve patient care, encourage research, and develop training.
- Rugby Club de CompiègneminorMembers of the Rugby Club de Compiègne created and sold a solidarity calendar (5 euros) to support OLY's research funding, motivated by a member's NOHL diagnosis.
Scale indicators4 records
Recent moves9 records
Expansion highlights7 records
Association Ouvrir Les Yeux competitors and assessment
Company assessmentBroad incumbents
- Fédération des Aveugles et Amblyopes de France: National French federation representing people who are blind or visually impaired, addressing disability rights, accessibility, and inclusion. Comparable as a French visual-impairment-focused organization with overlapping advocacy and accessibility missions.
- EURORDIS – Rare Diseases Europe: European-level alliance of 900+ rare disease patient associations across 73+ countries, of which OLY is a member. Comparable as the supranational umbrella providing OLY with policy advocacy leverage and European research networking.
- Alliance Maladies Rares: French umbrella collective of over 200 rare disease patient associations that organizes the Marche des Maladies Rares and represents OLY and similar groups at national policy level. Comparable as the broader French rare disease ecosystem player OLY operates within.
Direct peers
- AFM-Téléthon: France's leading rare disease nonprofit (focus on neuromuscular diseases), operating Téléthon fundraising, research co-funding, and patient services at national scale. Highly comparable as a French patient association combining donation-driven funding, research co-piloting, and policy advocacy.
- Vaincre la Mucoviscidose: Major French rare disease nonprofit for cystic fibrosis with a comparable operating model: donation-driven funding, research co-financing, patient services, regional antennas, and strong national visibility. Useful benchmark for governance and scale ambitions.
- Retina France: French patient association dedicated to retinal degenerative diseases, providing research funding, patient support, and advocacy. Directly comparable as a French vision-loss-focused nonprofit with overlapping therapeutic (gene therapy) and disability compensation missions.
- Association contre les Maladies Mitochondriales (AMMi): French patient association for mitochondrial diseases, a category that includes Hereditary Optical Neuropathies (NOH). Shares patient community, research advocacy focus, and rare disease support service model with OLY.
Emerging players
- Leber Hereditary Optic Neuropathy Association (LHONA): United States-based patient organization specifically dedicated to LHON (Leber Hereditary Optic Neuropathy). Directly comparable in disease focus but operates transatlatically rather than in France.
- LHON Project: International LHON-focused advocacy and awareness initiative, overlapping with OLY's mission on patient education, treatment access, and research awareness for the same disease population.
Others
- Fondation Groupama pour la Santé: Long-standing OLY partner since 2000, financing NOH studies and organizing lotos in Bretagne for OLY's benefit. Comparable as a French health-focused corporate foundation supporting rare disease research.
Market position
Strengths4 records
Weaknesses4 records
Competitive moat5 records
Key risks6 records
Key highlights6 records
Customer concentration
Association Ouvrir Les Yeux social profiles
Digital presenceAssociation Ouvrir Les Yeux compliance and trust
Trust signalCompliance2 records
Association Ouvrir Les Yeux financial estimates
Financial estimateRevenue estimate
Valuation estimate
Association Ouvrir Les Yeux leadership team
Management profileNumber of profiles
Profiles17 records
Association Ouvrir Les Yeux funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Association Ouvrir Les Yeux M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about Association Ouvrir Les Yeux
What does Association Ouvrir Les Yeux do?
Association Ouvrir Les Yeux is a French nonprofit patient association that provides free information, orientation, and support services for people affected by Hereditary Optical Neuropathies (NOH), including Leber and Kjer diseases. Its offerings include virtual workshops (Ateliers Connectés), community meetups (Apér'OLY), an annual scientific and patient conference (Journées de Partage), regional antenna support across France, and participation in the participatory EPICENTRE research program. Services are delivered to patients, families, healthy carriers, and young people affected by NOH, with funding coming from donations, membership fees, and corporate patronage.
Is Association Ouvrir Les Yeux a public or private company?
Association Ouvrir Les Yeux is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Association Ouvrir Les Yeux founded?
Association Ouvrir Les Yeux was founded in 2000. It employs 1 to 10 people.
Where is Association Ouvrir Les Yeux based?
Association Ouvrir Les Yeux is headquartered in Lens, France, in the Europe region.
How does Association Ouvrir Les Yeux make money?
Six revenue lines are on record. Membership Fees (Adhésion) is the primary driver. The others are donations (Dons), legacy Bequests (Legs), corporate Patronage (Mécénat), apprenticeship Tax (Taxe d'apprentissage) and shop / Merchandise.
Who are Association Ouvrir Les Yeux's main competitors?
Broad incumbents on record are Fédération des Aveugles et Amblyopes de France, EURORDIS – Rare Diseases Europe and Alliance Maladies Rares. Direct peers are AFM-Téléthon, Vaincre la Mucoviscidose, Retina France and Association contre les Maladies Mitochondriales (AMMi). Emerging players are Leber Hereditary Optic Neuropathy Association (LHONA) and LHON Project. Fondation Groupama pour la Santé is listed as an others.
Does Association Ouvrir Les Yeux have an API?
No public API is recorded for Association Ouvrir Les Yeux.
What industry is Association Ouvrir Les Yeux in?
Association Ouvrir Les Yeux's product category is Rare Disease Patient Support Services. Its primary akta.pro industry code is BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS), with a secondary code of BPADAIAK, Non-Communicable Diseases (NCDs) & Mental Health Programs. Its NAICS code is 624 and its SIC code is 8300.