Fundación Alpe Acondroplasia

Name

Fundación Alpe Acondroplasia

Legal name

Fundación Alpe Acondroplasia

Website

https://fundacionalpe.org

Company type

Private

Founded year

2000

Operating status

Operating

Headcount range

1–10 employees

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy

NAICS

Voluntary Health Organizations (813212), Services for the Elderly and Persons with Disabilities (624120)

SIC

Services-Social Services (8300)

akta.pro industry

PRIMARYBPAGACAA

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS)

Business & Public Services/Nonprofit, NGO & Social Services/Health & Medical Nonprofits

Keywords

• Rare disease advocacy
• Patient support services
• Skeletal dysplasia care
• Medical research dissemination
• Disability inclusion programs

Headquarters

HQ city

Gijón

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. Donations and Charitable Contributions: The foundation receives donations from individuals, companies, and organizations to fund its charitable activities. Services are provided free of charge to beneficiaries. The foundation promotes donation programs such as 'Amigos de ALPE' with tax deductibility benefits in Spain.
2. Corporate Sponsorships: Companies sponsor specific programs and initiatives. Notable sponsors include Fundación Cajastur (Atención Integral program), Neoelectra (long-term support), and others. Sponsorship funds support the foundation's charitable mission.
3. Merchandise Sales: The foundation operates a 'Mercadillo' (small market) selling merchandise. Proceeds help finance projects supporting people with ADEE.

Distribution channels2 records

Marketing channels6 records

Core offering

Fundación Alpe Acondroplasia provides free comprehensive support services to people with achondroplasia and other skeletal dysplasias with dwarfism (ADEE) and their families in Spain, anchored by the Programa de Atención Integral (Comprehensive Care Program). It complements this with patient/professional training (ADEE Expertos), an online resource library, awareness campaigns (#SeeMe), annual congresses, the ALPE Camp, recognition awards, and representation of ADEE patients in research, policy, and international forums.

Product overview

Fundación Alpe Acondroplasia is a non-profit foundation that operates as a unified service organization rather than a commercial product company. Its core offering is the Integral Attention Program (Programa de Atención Integral) for people with Achondroplasia and other Skeletal Dysplasias with Dwarfism (ADEE), supported by complementary programs including ADEE Expertos professional training, a Library resource center, the #SeeMe social awareness campaign, ALPE Camp, annual Congresses, and the ALPE Awards. The organization focuses on medical/scientific research promotion, education support, and social advocacy for the ADEE community.

Differentiator

Problem solved

Functional benefit

Products and services

• Programa de Atención Integral a las personas con ADEE y sus familias Comprehensive care program providing clinical and therapeutic attention along with mediation and information services for people with Achondroplasia and other Skeletal Dysplasias with Dwarfism (ADEE) and their families.
• ADEE Expertos - Formación Expert patient and professional training program featuring talks from world-renowned specialists on topics of interest in skeletal dysplasias.
• Biblioteca Document repository providing solutions to the needs of people with ADEE, containing scientific materials, guides, and educational resources.
• #SeeMe Campaign Social media campaign developed in collaboration with BioMarin to raise awareness about living with achondroplasia and other skeletal dysplasias, challenging stereotypes and promoting inclusion.
• Campamento ALPE Annual adventure and recreational camp for children with ADEE held in Ribadesella, Asturias, providing holistic development activities beyond just entertainment.
• Congresos ALPE International and national congresses bringing together the ADEE community, healthcare professionals, and researchers to share knowledge and advance care.
• Premios ALPE Awards instituted in 2012 to recognize efforts of individuals, institutions, researchers, and social entities for visibility, inclusion, and improving quality of life for people with achondroplasia.
• Hoja de Ruta de la Acondroplasia Collaborative roadmap developed with patient organizations worldwide, providing guidance on medical care, social support, and life milestones for people with achondroplasia across three dimensions: individual, healthcare, and society.

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

Six partnerships are on record, tiered minor and core.

• NTT DATAminorStrategic or Co-development Partner · 26 January 2026Collaboration under the 'Detección de talentos' (Talent Detection) project to make the labor market accessible to people with ADEE. NTT DATA posts employment opportunities in collaboration with Fundación ALPE.
• BioMarincoreGTM or Marketing Partner · 9 June 2025Collaboration on the #SeeMe social media campaign to change perception of achondroplasia and skeletal dysplasias. Also collaborated on the Achondroplasia Roadmap project with international patient organizations. BioMarin is the developer of Voxzogo (vosoritide), the first approved medication for achondroplasia.
• QED Therapeutics / BridgeBiocoreStrategic or Co-development Partner · 1 January 2025Foundation maintains active collaboration with QED/BridgeBio on clinical trials for infigratinib, an oral treatment for achondroplasia. The foundation provides patient representation, disseminates clinical trial information, and participates in patient advocacy programs.
• SDAlliance (Skeletal Dysplasias Alliance)coreStrategic or Co-development Partner · 5 July 2024European alliance of skeletal dysplasia organizations co-founded by Fundación ALPE. Includes organizations from UK, Russia, Poland, Brazil, Argentina, Uruguay, Chile, Italy, Portugal, France, and Spain. Works on common demands and policy advocacy at European level.
• Chandler ProjectminorStrategic or Co-development Partner · 1 June 2024Organizer of Pharmachon conferences that bring together researchers and patients. Fundación ALPE participates in patient representation programs at these events.
• Association des Personnes de Petite Taille (APPT)coreStrategic or Co-development Partner · 1 January 2022French national association for people with growth disorders of bone origin. ALPE participates in APPT conventions and collaborates on international projects including the #SeeMe campaign.

Scale indicators3 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• FEDER (Federación Española de Enfermedades Raras): Spanish umbrella federation for rare diseases, of which ALPE is a member/comparable organization. Broader incumbent covering all rare diseases in Spain rather than specializing in achondroplasia.
• EURORDIS – Rare Diseases Europe: European-level alliance for rare disease patient organizations. Comparable to ALPE's broader advocacy and policy work and operates as a peer in the same European patient-advocacy ecosystem.

Emerging players

• The Chandler Project: U.S.-based achondroplasia advocacy organization that organizes the Pharmachon conferences connecting researchers and patients. Comparable to ALPE as a focused, smaller-scope achondroplasia advocacy group; ALPE participates in its programs.
• Growing Stronger: U.S. nonprofit focused on achondroplasia and skeletal dysplasia research and family support. A focused emerging peer with similar disease-specific mission but smaller scale than broad dwarfism organizations.

Others

• Skeletal Dysplasias Alliance (SDAlliance): European alliance co-founded by Fundación ALPE, comprising patient organizations across multiple countries. Comparable as a coalition of skeletal dysplasia patient groups, in which ALPE is a leading member.
• Fundación Inocente Inocente: Spanish foundation supporting children with rare diseases, including ALPE as a beneficiary. Thematically related grantmaking foundation rather than direct competitor; functions as a peer in the Spanish pediatric rare-disease nonprofit ecosystem.

Regional players

• ALIGERI (Associazione Italiana per la Persona con Bassa Statura): Italian association for people with short stature and skeletal dysplasias. Comparable as a national patient advocacy organization serving the ADEE community in Italy, part of the same European network as ALPE.

Direct peers

• Little People UK: UK charity dedicated to people with dwarfism and their families, providing support, advice, and advocacy. Directly comparable to ALPE as a national patient organization for skeletal dysplasias in a European country.
• Association des Personnes de Petite Taille (APPT): French national association for people with growth disorders of bone origin, with which Fundación ALPE already partners on #SeeMe and international projects. Direct mission peer serving the same disease population in France.
• Little People of America: The largest U.S.-based nonprofit dedicated to people with dwarfism and their families. Directly comparable to Fundación ALPE in mission (advocacy, medical information, community support for people with skeletal dysplasias), although operating in the U.S. market.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• Facebookfacebook.com/FundacionALPE
• Instagraminstagram.com/fundacionalpe
• LinkedInlinkedin.com/company/fundaci%C3%B3n-alpe-acondroplasia

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Fundación Alpe Acondroplasia