Asociación Española de Aniridia

What Asociación Española de Aniridia does

Asociación Española de Aniridia (AEA) is a non-profit patient association founded on June 15, 1996 and headquartered in Madrid, Spain, that serves as the only specialized Spanish organization exclusively dedicated to aniridia — a rare, congenital, hereditary, chronic and disabling eye condition caused by a mutation in the PAX6 gene, affecting an estimated 1 in 40,000–100,000 people. AEA functions as a bridge between affected patients, their families, and the medical community, delivering its core service SIOAS (Servicio de Información y Atención Social, registered with the Community of Madrid) and operating a portfolio of programs including socio-economic aid, rehabilitation therapy access, the "Aniridia mes a mes" monthly webinar series, annual family encounters (the XXV edition held in Cambrils in April 2025 drew 55 participants from more than 15 families), the "Míranos, Mírales" professional awareness campaign, school outreach under "No somos invisibles, tenemos baja visión," and the "Juntos Podemos" volunteer plan. The association runs the science-communication blog "La Ciencia a tu Alcance" and an Advisory Scientific Council, and in 2025 launched the AnirI+Dia research grant — awarding its inaugural 12,000 euros to a CRISPR gene therapy project at Instituto de Microcirugía Ocular (IMO) Miranza directed by Dr. Esther Pomares. The technology footprint is a standard web/content platform: WordPress-hosted aniridia.es with a member area, the dedicated science blog at aniridiayciencia.aniridia.es, YouTube for translated conference content, and active profiles on Facebook, Twitter/X, Instagram, LinkedIn; the entity holds SSL certification, GDPR/RGPD compliance, and no proprietary AI, APIs, SDKs, or apps.

AEA's business model is a diversified non-profit revenue stack rather than a commercial product. Funding comes from individual and corporate membership fees under the "Hazte socio" program, individual donations (with €10/€50/€100 presets plus custom amounts via bank transfer and Bizum), corporate collaborator sponsorships and percentage-of-sales allocations, branded merchandise sales (t-shirts, backpacks, pens, foldable bags), Christmas lottery participations on number 27292, and solidarity favors for events. Institutional support comes from the 0.7% IRPF tax allocation via Comunidad de Madrid and the Ministerio de Derechos Sociales y Agenda 2030. No revenue figure is publicly disclosed. The association was declared of Public Utility on July 15, 2015 by the Ministry of Interior, holds the Fundación Lealtad transparency seal, and is a founding member of FEDER (Federación Española de Enfermedades Raras), ONERO, and Aniridia Europa, and member of EURORDIS. Distribution is community-led: digital channels and content drive awareness and acquisition, while annual family encounters, medical congress participation (SEO, Real Academia Nacional de Medicina), and direct contact via phone (688 905 553) and email ([email protected]) handle mid- and bottom-funnel engagement across Spain and — via the FEMEXER alliance — Spanish-speaking patients in Mexico.

Name

Asociación Española de Aniridia

Legal name

ASOCIACION ESPAÑOLA ANIRIDIA

Website

https://aniridia.es

Company type

Private

Founded year

1996

Operating status

Operating

Headcount range

1–10 employees

Short description

Asociación Española de Aniridia is a Madrid-based non-profit patient association founded in 1996 that supports people with aniridia and their families in Spain through social services, scientific information, research grants, and family encounters.

Ownership category

akta.pro rank

Headquarters

HQ city

Madrid

HQ country

Spain

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Membership fees: Annual dues from individual members and corporate collaborator members (empresas colaboradoras) through the 'Hazte socio' program.
2. Individual donations: One-time donations from individuals via bank transfer (ES79 0081 0451 0600 0143 8149) and Bizum (01013), with donation certificates provided for tax deductions.
3. Merchandising: Sale of branded merchandise including t-shirts, backpacks, pens, and foldable bags.
4. Corporate donations and sponsorships: Corporate collaborators contribute annual fees; some companies allocate a percentage of sales to the entity; corporate donations are welcomed.
5. Christmas lottery: Sale of lottery participations (number 27292) for the Christmas lottery, with 0.50 euros per participation donated to the entity.
6. Solidary details for events: Custom solidary gift items (wedding favors, communion items) for events, with proceeds going entirely to the entity's social mission.
7. Government subsidies and grants: Receives subsidies including 0.7% of IRPF from Comunidad de Madrid, and support from Ministerio de Derechos Sociales y Agenda 2030.

Pricing tiers

Go-to-market motion1 record

Distribution channels4 records

Marketing channels10 records

Core offering

The Asociación Española de Aniridia (AEA) is a non-profit patient association that provides social information and attention services (SIOAS), socio-economic aid, emotional and peer support, genetic counseling referrals, and rehabilitation therapy coordination for individuals affected by aniridia and their families. It also funds scientific research through the AnirI+Dia grant, runs awareness campaigns for early diagnosis, and disseminates scientific knowledge via its 'Aniridia y Ciencia' blog and monthly webinars.

Product overview

Asociación Española de Aniridia is a non-profit patient association (not a technology company) that provides support services to people with aniridia and their families. The organization operates SIOAS as its core social service, supplementing it with the 'Aniridia y Ciencia' scientific blog for research dissemination, an annual research grant program (AnirI+Dia), awareness campaigns like 'Míranos, Mírales', the monthly 'Aniridia Mes a Mes' webinar series, a volunteer program ('Juntos Podemos'), and solidarity merchandise. The association does not develop or sell technology products.

Differentiator

Problem solved

Functional benefit

Products and services

• SIOAS (Servicio de Información y Atención Social) Core social information and attention service providing support, guidance, and resources to patients and families affected by aniridia, registered with the Community of Madrid's Register of Social Action Entities.
• Aniridia y Ciencia Blog Scientific blog titled 'La ciencia a tu alcance' (Science within reach) that publishes scientifically verified articles and information about aniridia and associated pathologies.
• AnirI+Dia Research Grant Research grant program endowed with 12,000 euros supporting national research projects on aniridia, directed at projects like the CRISPR gene therapy study at IMO Miranza.
• Aniridia Mes a Mes Webinar Series Monthly webinar series featuring specialists from various fields providing comprehensive views on aniridia and low vision, held on the last Thursday of each month at 19:00.
• Campaña Míranos, Mírales Information, awareness, and prevention campaign targeting healthcare professionals with the central message 'Mis ojos son para siempre, mímame' (My eyes are forever, take care of me).
• Plan de Voluntariado 'Juntos Podemos' Volunteer program where altruistic collaborators work across the association's areas of operation and activities.
• Solidarity Merchandise Annual solidarity merchandise including t-shirts, backpacks, pens, and foldable bags with aniridia branding, with proceeds supporting the association's social mission.
• Socio-Economic Aid Program Provides socio-economic assistance, rehabilitation therapy support (via FEDER and Fundación Mutua Madrileña IMPULSO program), and low-vision assistive device support to aniridia patients and families.

Quantifiable outcome

• 55 participants from more than 15 families attended the XXV Family Encounter in Cambrils 2025
• +2 more outcomes

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

20 partnerships are on record, tiered core and minor.

• FEDER (Federación Española de Enfermedades Raras)coreStrategic or Co-development PartnerFounding member of FEDER. Collaborates on patient registry enrollment, collective advocacy for rare disease policies in Spain, rehabilitation therapy programs (IMPULSO program with Fundación Mutua Madrileña), and awareness campaigns including the annual Rare Disease Day.
• EURORDIScoreStrategic or Co-development PartnerMember of EURORDIS, the European Organisation for Rare Diseases, providing access to European rare disease networks, research collaborations, and policy advocacy at the EU level.
• ONERO (Observatorio Nacional de Enfermedades Raras Oculares)coreStrategic or Co-development PartnerCollaborates with ONERO for patient registry enrollment for ocular rare diseases, referring patients for the National Registry of Rare Diseases at ISCIII.
• Ministerio de Derechos Sociales y Agenda 2030coreOthersGovernment ministry providing institutional support and funding to the entity as part of the Third Sector framework in Spain.
• Comunidad de MadridcoreOthersProvides 0.7% IRPF tax allocation funding to the association. The entity is inscribed in the Community of Madrid's Registry of Associations.
• Fundación LealtadcoreOthersAwards the Lealtad Foundation Seal to the association, recognizing its transparency, good governance, and adherence to good practices in non-profit management.
• FEMEXER (Federación Mexicana de Enfermedades Raras)minorStrategic or Co-development PartnerAEA joined the FEMEXER alliance network to serve Spanish-speaking patients outside Spain. AEA attends regular inquiries from Mexico and collaborates on improving the lives of people with aniridia residing in Mexico, though services like socio-economic aid cannot be offered outside Spain.
• Aniridia EuropacoreStrategic or Co-development PartnerFounding member and active participant in Aniridia Europa. Collaborates on European-level advocacy, research funding, the European Aniridia Conference, and international Aniridia Day campaigns.
• Fundación Mutua MadrileñacoreOthersThrough the IMPULSO program with FEDER, provides rehabilitation therapies to 1,500 people with rare diseases. In 2025, 5 children with Aniridia and WAGR from AEA benefited from this program.
• Laboratorios THEAminorOthersCollaboration agreement under which Laboratorios THEA donates artificial tears (Hyabak 0.15%) to AEA members at no cost. The product contains hyaluronic acid, is preservative-free, and avoids adverse reactions.
• Instituto de Microcirugía Ocular (IMO) MiranzaminorStrategic or Co-development PartnerRecipient of AEA's I Beca de Investigación (12,000 euros) for a CRISPR gene therapy project on aniridia, directed by Dr. Esther Pomares at IMO Miranza.
• Universidad de ValladolidminorStrategic or Co-development PartnerOngoing collaboration for university students to participate in cultural activities with the association. Students can earn university credits through volunteering and collaboration with AEA.
• ONCE (Organización Nacional de Ciegos Españoles)coreStrategic or Co-development PartnerONCE issued a commemorative lottery coupon on August 9, 2017, to promote visibility for aniridia. AEA participated in the launch of Fundación ONCE Baja Visión in March 2025. ONCE also hosts the National Rare Disease Registry (ISCIII) for patient referrals.
• Diputación de GranadaminorOthersRegional government entity that appears as a collaborating entity supporting AEA's activities.
• Diputación de CastellónminorOthersRegional government entity that appears as a collaborating entity supporting AEA's activities.
• Banco SabadellminorOthersCollaborates on the 'No somos invisibles, tenemos baja visión' school awareness campaign, providing funding for educational materials and activities.
• Ministerio de Educación y Formación ProfesionalminorOthersCollaborates on the 'No somos invisibles, tenemos baja visión' school awareness campaign, providing institutional support alongside Banco Sabadell.
• Aniridia-Net COST Action (CA18116)coreStrategic or Co-development PartnerAEA participates in the Aniridia-Net COST Action network alongside Aniridia Europa. This European research network focuses on improving clinical management of aniridia and promoting innovative research, including the AAK-INSIGHT project (1.4M euros over 3 years) on keratopathy treatment.
• Hospital Sant Joan de Déu BarcelonaminorStrategic or Co-development PartnerCollaborates on family education events and webinars. Dr. Héctor Salvador from this hospital gave a presentation on Wilms tumor and aniridia as part of the 'Aniridia mes a mes' series.
• Fundación Jiménez DíazminorStrategic or Co-development PartnerFour researcher doctors from the Genetics Department (Dras. Marta Cortón, Carmen Ayuso, Ana Bustamante, María José Trujillo) participate in AEA's 'Aniridia mes a mes' webinar series on genetics and embryo selection.

Scale indicators5 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• NORD (National Organization for Rare Disorders): US-based leading rare disease patient advocacy organization. Comparable as a mature, broad-incumbent rare disease federation with member associations, research programs, and policy advocacy analogous to AEA's role at national level.
• ONCE (Organización Nacional de Ciegos Españoles): Spain's national organization for the blind and visually impaired. Comparable in mission scope (visual disability support), funding model (lottery-based), and Spanish institutional weight; AEA participates in Fundación ONCE Baja Visión.
• EURORDIS (European Organisation for Rare Diseases): Pan-European rare disease alliance of which AEA is a member. Comparable as a larger, established rare-disease advocacy and federation entity that operates across broader disease areas and EU-level policy influence.

Others

• Orphanet: European reference portal for rare diseases and orphan drugs. Comparable as an enabling infrastructure player in the rare disease ecosystem where AEA operates; Orphanet provides the disease nomenclature and registry infrastructure AEA leverages.

Regional players

• FEMEXER (Federación Mexicana de Enfermedades Raras): Mexican federation of rare disease organizations with which AEA has a partnership to serve Spanish-speaking aniridia patients in Mexico. Comparable as a regional rare disease patient federation with similar membership and advocacy model.

Direct peers

• Retina España: Spanish association for patients with inherited retinal dystrophies. Closely comparable as a Spanish patient association for a rare ocular disease, operating research grants, family support, and scientific content dissemination.
• FEDER (Federación Española de Enfermedades Raras): Spanish federation of rare disease associations of which AEA is a founding member. Directly comparable as a Spanish non-profit patient-advocacy umbrella operating a membership model, government subsidies, and the same IMPULSO rehabilitation program.
• Aniridia Europa: European federation of national aniridia associations and AEA's sister organization. Most directly comparable peer in terms of disease focus, member-based governance, and advocacy work; AEA is a founding member.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/channel/aniridia
• Facebookfacebook.com/asociacionespanoladeaniridia
• LinkedInlinkedin.com/company/asociaci%C3%B3n-espa%C3%B1ola-de-aniridia

Compliance4 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Asociación Española de Aniridia