Asociación Española del Síndrome Klinefelter

What Asociación Española del Síndrome Klinefelter does

Asociación Española del Síndrome Klinefelter (AESK) is a Spanish non-profit patient advocacy association founded in 2019 and headquartered in Boadilla del Monte, Community of Madrid. It is dedicated exclusively to Klinefelter Syndrome (47,XXY and chromosomal variants) and serves affected adults, children and adolescents, their families, and the medical professionals who treat them. The association delivers its mission through a service portfolio that includes support and self-help groups, a multidisciplinary medical specialist network (endocrinology, andrology, urology, genetics, psychology, psychiatry, speech therapy, nutrition, sexology, and sports medicine), monthly workshops and webinars, an annual in-person congress (12+ hours of livestreamed content in 2025), an educational blog, a youth summer camp program in Segovia, and employment inclusion support. AESK was declared a Public Utility organization by the Spanish government in 2024, extending its credibility and funding access.

AESK operates without paid staff: all work is delivered by volunteer members of a Governing Board (Junta Directiva) led by President and co-founder Benjamín Gómez Garrido. Revenue is generated through three streams — recurring member dues (cuotas de socios), individual and partner donations (including a documented €350 contribution from Vico), and European Union PRTR funding — with no public pricing or financial disclosure. Distribution is direct-to-member through the asociacionxxy.es website, two WhatsApp helplines, Instagram and YouTube channels, podcast/radio appearances, and in-person events. Beyond Spain, the association co-founded Voces XXY Latinoamérica and ran a Mexico event with 80+ attendees, formalizing its expansion into the Spanish-speaking Latin American market. Key institutional partners include Fundación Jérôme Lejeune (Spain), Integra CEE (employment training), Universidad Durango Campus Chihuahua (genetic medicine jornadas), HÁBLAME PSICOLOGÍA (affordable therapy), FIDELITIS Abogados (disability legal services), and ANAR (crisis helpline referrals).

Name

Asociación Española del Síndrome Klinefelter

Legal name

ASOCIACIÓN ESPAÑOLA DEL SINDROME DE KLINEFELTER

Website

https://asociacionxxy.es

Company type

Private

Founded year

2019

Operating status

Operating

Headcount range

1–10 employees

Short description

The Asociación Española del Síndrome Klinefelter (AESK) is a Spanish non-profit patient advocacy association providing support, information, and a multidisciplinary medical specialist network to adults, children, and families affected by Klinefelter Syndrome in Spain and Latin America.

Ownership category

akta.pro rank

Product category

Patient Advocacy Services

NAICS

Individual and Family Services (6241)

SIC

Services-Social Services (8300)

akta.pro primary industry

Down Syndrome & Intellectual/Developmental Disabilities (IDD) Childcare (HSAAAIAC)

akta.pro secondary industry

Special Education Staffing & Contracted Providers (Paras, Therapists, Specialists) (EDAJAKAL)

Keywords

• Patient advocacy services
• Rare disease support
• Genetic condition association
• Community health support
• Disability inclusion programs

Headquarters

HQ city

Madrid

HQ country

Colombia

HQ region

Latin America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Membership fees (cuotas de socios): Members pay periodic membership dues to support the association and access its services, resources, and community activities.
2. Donations (donaciones): The association receives economic and material donations from individuals, collaborators, and partner organizations. A notable example is Vico, which donated 350 euros through member participation.
3. European Union funding: The association receives EU funding as part of the PRTR (Plan de Recuperación, Transformación y Resiliencia) and UE financing programs, as evidenced by EU logos displayed on the website footer.

Go-to-market motion1 record

Distribution channels3 records

Marketing channels8 records

Core offering

The Asociación Española del Síndrome de Klinefelter (AESK) is a non-profit patient advocacy organization that provides support, information, and community services to people affected by Klinefelter Syndrome (47,XXY) and their families. Its core offering consists of self-help groups, family workshops, a multidisciplinary medical specialist network, an annual congress, educational blog content, summer camps for children and adolescents, and vocational inclusion support. The association also advocates for early diagnosis, school integration, and labor market inclusion for affected individuals.

Product overview

The Asociación Española del Síndrome de Klinefelter is a non-profit patient advocacy organization (Asociación) providing a comprehensive ecosystem of support services for individuals with Klinefelter Syndrome and their families. The organization operates as a service-oriented entity rather than a product company, offering direct support and guidance services, a network of multidisciplinary medical specialists, annual congresses and events, educational blog content, and youth programs including summer camps. The core offering consists of support groups, medical coordination, workshops, and informational resources aimed at improving quality of life and promoting social, educational, and labor integration.

Differentiator

Problem solved

Functional benefit

Quantifiable outcome

• More than 10 years average diagnostic delay for Klinefelter Syndrome in Spain, which the association actively works to reduce through physician education and public awareness campaigns.

Named customers2 records

Segments3 records

Ideal customer profiles1 record

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Nine partnerships are on record, tiered core and minor.

• Integra CEE – Centros Especiales de EmpleocoreStrategic or Co-development Partner · 25 February 2026Integra CEE provides employment training and labor inclusion services for people with disabilities. They delivered an intensive training session to association members on job seeking and career development. The collaboration aims to generate real employment opportunities for people with Klinefelter Syndrome, focusing on dignity, autonomy, and future prospects.
• Universidad Durango Campus ChihuahuacoreStrategic or Co-development Partner · 1 January 2026The association participated in the first Genetic Medicine jornadas (June 2026) at Universidad Durango Campus Chihuahua, Mexico. President Benjamín Gómez represented the association, delivering talks on Klinefelter Syndrome to medical students and the local community.
• VicominorGTM or Marketing PartnerVico is a financial partner that donates 350 euros to the association through the active participation and savings of association members. Judith and Javier, Vico's founders, formalized the donation to the association president.
• Fundación Jérôme LejeunecoreStrategic or Co-development PartnerThe Fundación Jérôme Lejeune (Spain) collaborates with the association to provide specialized medical care for people with genetic intellectual disabilities, including Klinefelter Syndrome. The collaboration includes awareness events, webinars, and shared educational content. Dr. Pilar García Fernández serves as medical director of the foundation's Spanish branch.
• Voces XXY LatinoaméricacoreStrategic or Co-development PartnerCo-founded by Benjamín Gómez (AESK President), Voces XXY Latinoamérica is a regional sister organization representing the Klinefelter and XXY community across Latin America. The Mexico headquarters was launched at Casa de Andalucía in Mexico. Both organizations share the mission of raising awareness and supporting affected families across Spanish-speaking countries.
• Asociación La BarandillaminorStrategic or Co-development PartnerAsociación La Barandilla, formed by people with disabilities, families, and mental health professionals, collaborates with AESK on suicide prevention initiatives. AESK President Benjamín Gómez participated in a live prevention broadcast alongside La Barandilla.
• HÁBLAME PSICOLOGÍAminorStrategic or Co-development PartnerHÁBLAME PSICOLOGÍA provides affordable psychological therapy sessions (30 euros per session) for people with Klinefelter, Jacobs, and Turner syndromes. The association facilitated this partnership to address the critical need for accessible mental health care among its members.
• ANAR (Ayuda a Niños y Adolescentes en Riesgo)minorOthersANAR provides crisis helplines for children (900 20 20 10) and adults (600 50 51 52). The association lists ANAR's contact information as a resource for members facing crisis situations.
• FIDELITIS AbogadosminorImplementation/ SI/ Consulting PartnerFIDELITIS is a law firm specializing in disability and incapacity cases. They delivered a webinar to association members explaining disability classifications, legal benefits, protected assets, and wills for people with Klinefelter Syndrome.

Scale indicators5 records

Recent moves7 records

Expansion highlights6 records

Direct peers

• AXYS (Association for X and Y Chromosome Variations): The leading U.S. patient advocacy organization for X and Y chromosome variations including Klinefelter Syndrome (47,XXY). The most direct international functional peer, addressing the same condition, patient journey, and multidisciplinary care gaps as AESK.
• Fundación Jérôme Lejeune (Spain): Spanish branch of the international foundation focused on genetic intellectual disabilities, including Klinefelter Syndrome. AESK's most direct clinical-services peer and active partner, sharing overlapping medical specialist networks and patient-advocacy mission.

Broad incumbents

• FEDER (Federación Española de Enfermedades Raras): The national Spanish federation of rare-disease patient organizations. AESK sits within FEDER's ecosystem as a condition-specific member; FEDER provides umbrella advocacy, policy access, and federation-level grants that shape AESK's operating environment.
• Plataforma de Organizaciones de Pacientes: Spanish national platform representing more than 70 patient organizations, including rare-disease and chronic-condition groups. Provides policy representation, training, and visibility that influence AESK's positioning within the broader Spanish patient-advocacy landscape.
• EURORDIS – Rare Diseases Europe: European-level alliance of rare-disease patient organizations. Provides policy advocacy, EU funding access, and pan-European networks that directly shape the operating context for AESK's EU grant strategy and cross-border collaboration.

Regional players

• Klinefelter Syndrome Association (UK): UK-based patient organization dedicated specifically to Klinefelter Syndrome. Closest single-condition peer outside the Spanish-speaking world, useful as a comparator for membership model, medical network structure, and event programming.

Emerging players

• Asociación Síndrome de Turner (Spain): Spanish patient association for Turner Syndrome, another sex-chromosome aneuploidy. Highly comparable in mission, services, and operating model to AESK, with overlapping medical specialties and shared challenges in late diagnosis and specialist access.
• Down Madrid: Madrid-based advocacy and support organization for people with Down syndrome and other IDDs. Comparable in service mix (early support, employment, family services, public-utility status) and Madrid/regional footprint, though focused on trisomy 21 rather than sex-chromosome aneuploidies.
• Asociación La Barandilla: Spanish association of people with disabilities, families, and mental health professionals. Active AESK partner on suicide prevention, with overlapping audience of families affected by disability-related mental health issues.

Others

• ANAR Foundation (Ayuda a Niños y Adolescentes en Riesgo): Spanish non-profit operating crisis helplines for children and adolescents at risk. Listed by AESK as a referral resource; comparable in scale and non-profit/advocacy posture, with adjacent (rather than overlapping) service line in crisis intervention.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/@asociacionxxy
• Instagraminstagram.com/asociacionxxy_es

Compliance1 record

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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Frequently asked questions about Asociación Española del Síndrome Klinefelter