Rett Spain

What Rett Spain does

Rett Spain (Asociación Española de Síndrome de Rett, AESR) is a non-profit patient association founded in 1992 in Valencia as the Asociación Valenciana de S\u00edndrome de Rett by a group of affected parents, expanded to national scope in September 2010, and declared an Entity of Public Utility by the Spanish Ministry of the Interior in 2017. The organization is the sole national-level patient association for Rett Syndrome in Spain, a rare severe neurodevelopmental genetic disorder affecting approximately 1 in 10,000 live female births. AESR is governed by a Junta Directiva chaired by President Pedro Rocha, operates a headquarters in Valencia (C/ Sollana, N\u00ba 28 B), and runs 12 regional delegations (Almería, Cádiz, Córdoba, Cataluña, Jaén, Murcia, Navarra, Pontevedra, Sevilla, Toledo, Zaragoza). The staff comprises a social worker, an administrative officer, and a social-media/events coordinator, supported by an altruistic volunteer base primarily composed of families.

Its portfolio of 'products' is a service and information bundle rather than a technology product: social work support, legal advice, group psychological care, therapy subsidies, temporary lending of IRISBOND eye-tracking AAC devices with GRID3 software, an annual family encounter (e.g., Benidorm 2026), virtual Café con Rett meetings, school sensitization visits, and publications including the Comunicación Guide, Cuadernos Rett, the annual entRettodos magazine, the Goya-finalist documentary 'Línea de Meta', and solidarity books. The association coordinates multidisciplinary clinical care via partnerships with Hospital Infantil Universitario Niño Jesús (Unidad de Atención Integral) and Hospital Sant Joan de Déu (Clínica Rett) in Barcelona, plus an adult-transition pathway at Hospital La Princesa. Research funding is operated through the FINRETT joint fund with the Asociación Catalana de Síndrome de Rett, which has disbursed approximately €155,839 across four grant calls (2019-2023) to teams at Institut Josep Carreras, Universidad Miguel Hernández de Elche, Universidad de Valencia, and others.

Revenue is generated exclusively through three streams: membership fees, donations from individuals and private companies (with donors able to direct contributions to research, therapies, or other uses and benefitting from 35-40% corporate tax deductions), and public subsidies from bodies including the Generalitat Valenciana (Conselleria de Sanidad), the Diputació de València, and the VIII Convocatoria IMPULSO (Fundación Mutua Madrileña and FEDER). No commercial product revenue exists. Outreach is community-led: organic social media (Facebook, Instagram, X, YouTube, LinkedIn), a resource-rich website at rett.es, an annual international photography contest, and participation in institutional events such as the World Rare Disease Day and CIBERER symposia.

Name

Rett Spain

Legal name

ASOCIACIÓN ESPAÑOLA DEL SÍNDROME DE RETT

Website

https://rett.es

Company type

Private

Founded year

1992

Operating status

Operating

Headcount range

1–10 employees

Short description

A non-profit patient association founded in 1992 and based in Valencia, Rett Spain (AESR) is the sole national association for Rett Syndrome in Spain, serving affected families across 12 regional delegations with social work support, AAC device lending, multidisciplinary hospital partnerships, and the joint FINRETT research fund.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Support Services

NAICS

Other Individual and Family Services (62419), Individual and Family Services (6241), Educational Support Services (611710)

SIC

Services-Social Services (8300), Services-Membership Organizations (8600), Services-Educational Services (8200)

akta.pro primary industry

Remedial & Academic Intervention Programs (Reading/Math Recovery) (EDAJAGAC)

Keywords

• Rare disease support
• Patient advocacy
• Neurodevelopmental disorders
• Disability services
• Nonprofit healthcare

Headquarters

HQ city

Valencia

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: Members pay fees to join the association, gaining access to services such as social work support, legal advice, psychological services, therapy subsidies, and AAC device lending. Membership also provides informational resources and participation in family events.
2. Donations from individuals and private companies: The association is funded primarily through donations from individuals and private companies. These are solicited via the website, events, and solidarity celebrations. Donors can specify the destination of their donation (research, therapies, etc.).
3. Public subsidies and grants: AESR receives subsidies from government bodies including the Generalitat Valenciana (Conselleria de Sanitat), the Diputació de València, and the VIII Convocatoria IMPULSO (Fundación Mutua Madrileña and FEDER). These fund operational maintenance, social action entities, mutual aid programs, and organizational activities.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels8 records

Core offering

Rett Spain (AESR - Asociación Española de Síndrome de Rett) is a national non-profit patient association that delivers support services, Spanish-language information resources, family community programs, therapy subsidies, and temporary lending of augmentative and alternative communication (AAC) eye-tracking devices to families affected by Rett Syndrome in Spain. It also coordinates and co-funds Rett Syndrome research through the FINRETT joint research fund and connects families to specialized multidisciplinary hospital units.

Product overview

Rett Spain (AESR - Asociación Española de Síndrome de Rett) is a non-profit patient association that provides a comprehensive ecosystem of resources, services, and support for families affected by Rett Syndrome. The organization does not offer a unified technology product but rather a portfolio of informational publications (Guía de Comunicación, Cuadernos Rett, entRettodos magazine), educational media (documentaries 'Ell@s también existen' and 'Línea de Meta'), books (La Princesa Sin Palabras, Relatos con causa), and annual events (international photography contest, family encounters, Café con Rett virtual meetings). The association also offers practical support services including the temporary lending of visual communicators for families needing eye-tracking communication devices. Research funding is coordinated through the FinRett initiative, and the organization maintains 12 regional delegations across Spain.

Differentiator

Problem solved

Functional benefit

Products and services

• AESR Member Services Bundle
• Temporary Visual Communicator Lending Service
• Café con Rett Virtual Family Meetings
• entRettodos Annual Magazine
• Guía de Comunicación del Síndrome de Rett
• Cuadernos Rett (Rett Notebooks)
• La Princesa Sin Palabras (Children's Book)
• Relatos con Causa (Story Collection)
• VIII International Photography Contest "Rett Spain"
• Annual Family Encounter (Encuentro de Familias)
• FINRETT Joint Research Fund
• Solidarity Calendar (Calendario Solidario)

Quantifiable outcome

• 1 in 10,000 live female births affected by Rett Syndrome — AESR is the primary national support organization serving this population
• +2 more outcomes

Named customers2 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

16 partnerships are on record, tiered core and minor.

• Asociación Catalana de Síndrome de Rett (ACSR)coreStrategic or Co-development Partner · 1 February 2017AESR and ACSR jointly established the FINRETT research fund in 2017 to consolidate and transparently manage fundraising for Rett research across Spain. Both associations share governance through a Joint Monitoring Commission and a Scientific Committee, and jointly publish annual research grant calls. This is AESR's flagship research collaboration.
• Rett Syndrome Europe (RSE)coreOthersAESR is a member of Rett Syndrome Europe (RSE), the European-level patient organization for Rett Syndrome. RSE connects national associations across Europe and advocates for Rett patients at the EU level.
• FEDER (Federación Española de Enfermedades Raras)coreOthersAESR is a member of FEDER, the Spanish Federation of Rare Diseases, which advocates for the rights of rare disease patients in Spain and coordinates national rare disease policy.
• Hospital Infantil Universitario Niño Jesús (Madrid)coreStrategic or Co-development PartnerEstablished in 2019, this collaboration created the Unidad de Atención Integral de Síndrome de Rett at the hospital. The unit provides free multidisciplinary care (neuropediatrics, cardiology, pneumology, gastroenterology, rehabilitation, dentistry, ophthalmology, ORL, psychiatry, palliative care, and more) to Rett patients from across Spain. AESR co-funds and helps coordinate the unit, which is led by Dr. García Peñas and coordinated by Dr. Victor Soto Insuga.
• Hospital Sant Joan de Déu (Barcelona)coreStrategic or Co-development PartnerAESR collaborates with the Sant Joan de Déu Children's Hospital's specialized Rett Clinic, which serves as a reference center for diagnosis, treatment, and follow-up of Rett and Rett-Like patients. The hospital is developing a new neurostimulation unit (2020) as part of its Brain Project. Dr. Mar O'Callaghan coordinates the unit, and Dr. Armstrong leads the diagnosis unit.
• Hospital La Princesa (Madrid)minorStrategic or Co-development PartnerAESR has established a collaboration with Hospital La Princesa in Madrid for the ongoing care of adult Rett patients. The hospital, with experience in rare diseases and transition programs, offers services through Dr. Moyano (Internal Medicine) and Dr. Toledo (Neurology). This addresses the critical gap in care for aging Rett patients who need to transition from pediatric to adult healthcare.
• GW Research Ltd (pharmaceutical company)minorStrategic or Co-development PartnerAESR collaborated with UK-based pharmaceutical company GW Research Ltd to facilitate the first-ever clinical trial of oral CBD solution for Rett Syndrome patients in Spain (study GWND18064). Although the trial was ultimately discontinued in 2020 due to COVID-19-related challenges, AESR played a critical role in patient recruitment and coordination. Premier Research served as the CRO for this study.
• Universidad Internacional Menéndez Pelayo (UIMP)minorStrategic or Co-development PartnerIn July 2017, AESR organized the first international Rett congress held in Spain at the UIMP in Santander. This congress gathered leading international researchers and became the launchpad for the FINRETT research fund. The event was recorded and its proceedings are available as educational resources.
• Various international Rett Syndrome associationsminorOthersAESR maintains relationships and information exchanges with Rett associations worldwide including those in the UK (Rett UK), Germany, Austria, Belgium, Canada, Denmark, France, Netherlands, Ireland, Italy, Norway, New Zealand, Poland, Czech Republic, Portugal, and the USA (Rettsyndrome.org). These connections facilitate international knowledge sharing and research collaboration.
• Fundación Jérôme LejeuneminorStrategic or Co-development PartnerIn November 2025, AESR and the Fundación Jérôme Lejeune España formalized a collaboration aimed at improving care for people with Rett Syndrome and their families. The foundation focuses on research and care for intellectual disabilities of genetic origin, aligning with AESR's mission.
• Universidad Miguel Hernández de Elche (UMH)minorStrategic or Co-development PartnerAESR collaborates with UMH's research team led by Salvador Martínez Pérez on a FINRETT-funded project using mesenchymal stem cells to rescue functional defects in Rett Syndrome. The project aims to create Spain's only Spanish neural crest stem cell biobank, potentially enabling future gene and cell therapy for patients.
• Universidad de Málaga (UMA)minorStrategic or Co-development PartnerAESR is collaborating with a team of physiotherapy researchers at the University of Málaga on a cross-cultural adaptation study of the Motor Evaluation Scale for Rett Syndrome (RESMES). The goal is to validate and adapt this assessment tool for the Spanish Rett population to advance clinical research.
• Institut Josep Carreras (Leukemia Research Foundation)minorStrategic or Co-development PartnerAESR partners with the Josep Carreras Research Institute through the FINRETT fund. Multiple FINRETT-funded projects have been awarded to research teams at this institute, including work by researchers Sónia Guil Domènech on transcriptomics of Rett neurons and Manel Esteller Badosa on spatial epigenomics of the respiratory pacemaker.
• Universidad Complutense de MadridminorStrategic or Co-development PartnerAESR collaborated with Dr. Nuria Galán González at the Universidad Complutense de Madrid on a study examining the impact of Rett Syndrome on families. 222 family members participated, and the resulting doctoral thesis received the highest academic distinction.
• Rettsyndrome.org (USA)minorOthersRettsyndrome.org (USA) funded the development of the international Communication Guide for Rett Syndrome, which AESR translated into Spanish and made freely available to Spanish-speaking families. This guide is one of AESR's most important educational resources.
• Rett Syndrome Research Trust (RSRT, USA)minorOthersRSRT is a major US-based research funding organization focused on Rett Syndrome. Its executive director Mónica Coenraads participated in the 2017 International Congress organized by AESR in Santander, and RSRT's research priorities influence AESR's research funding strategy through FINRETT.

Scale indicators3 records

Recent moves7 records

Expansion highlights5 records

Broad incumbents

• FEDER (Federación Española de Enfermedades Raras): Spanish Federation of Rare Diseases and AESR's parent federation. Operates broadly across all rare diseases in Spain, providing national policy advocacy and coordination that complements AESR's disease-specific work.
• Rett Syndrome Europe (RSE): European umbrella federation of national Rett Syndrome associations, of which AESR is a member. Provides broader EU-level advocacy and coordination across the European Rett community.

Emerging players

• Asociación Española de Esclerosis Lateral Amiotrófica (ADELA): Spanish national patient association for ALS, another severe progressive neurological disorder. Comparable as a national Spanish patient association structure serving a small, geographically dispersed rare disease population with similar fundraising and advocacy challenges.

Direct peers

• Fundación Jérôme Lejeune: Spanish foundation focused on research and care for intellectual disabilities of genetic origin, with overlapping mission. Formalized a collaboration with AESR in November 2025 to improve care for Rett Syndrome families.
• Rett Syndrome Research Trust (RSRT): US-based research funding organization focused exclusively on Rett Syndrome therapeutics. Comparable in disease focus and research-funding mission, and influences AESR's research priorities through the FINRETT mechanism.
• Asociación Catalana de Síndrome de Rett (ACSR): The Catalan Rett Syndrome association and AESR's principal collaborator; together they co-founded FINRETT in 2017 and jointly govern the research fund. Highly comparable in mission, structure, and disease focus, serving the same patient population in a different Spanish region.
• Rettsyndrome.org: The leading US-based Rett Syndrome patient organization that funded the international Communication Guide translated by AESR. Direct comparable as the largest English-language Rett patient association with similar advocacy, research funding, and family-support functions.
• Rett UK: National Rett Syndrome patient association in the United Kingdom. Highly comparable in mission, organizational structure, and disease focus, providing support services to British families affected by Rett Syndrome.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks7 records

Key highlights7 records

Customer concentration

• Xx.com/asociacionrett
• YouTubeyoutube.com/@AESRettSpain
• Facebookfacebook.com/rett.spain
• LinkedInlinkedin.com/company/rett-spain
• Instagraminstagram.com/rett.spain

Revenue estimate

Valuation estimate

Number of profiles

Profiles10 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Rett Spain