Alianza Iberoamericana de Enfermedades Raras o Poco Frecuentes - ALIBER

What Alianza Iberoamericana de Enfermedades Raras o Poco Frecuentes - ALIBER does

Alianza Iberoamericana de Enfermedades Raras o Poco Frecuentes (ALIBER) is an international non-profit association (asociación internacional sin ánimo de lucro), founded in October 2013 in Totana, Murcia, Spain, that acts as the regional umbrella for the rare disease patient movement across Iberoamerica. It aggregates over 700 patient organizations in 19 countries — Spain, Portugal, Mexico, Brazil, Colombia, Argentina, Chile, Costa Rica, Peru, Dominican Republic, Ecuador, Paraguay, Honduras, Guatemala, Panama and others — and represents the estimated 47 million people living with a rare disease in the region. Its core deliverables are the ENSERio LATAM and ENSERio Centroamérica socio-sanitary needs studies, the SIO (Servicio de Información y Orientación) patient-facing information and orientation service, the annual Congreso Iberoamericano de Enfermedades Raras, the Foro de Alto Nivel policy forum, and the Decalogue of Commitments adopted by 21 country representatives in Costa Rica in February 2025.

The technology layer is intentionally thin: a WordPress website at aliber.org, a digital radio platform (radioenfermedadesraras.com), a monthly newsletter, and standard social media channels. There is no proprietary software product, no mobile app, no API, and no data flywheel; the most technology-adjacent initiative is the RDCom diagnostic platform, which was built and launched by member organization Fundación SPINE rather than by ALIBER itself. Operations are run by a 5-person team led by President Juan Carrión Tudela (also President of FEDER) and Vice Presidents Jesús Navarro (OMER, Mexico) and Luz Victoria Salazar (ACOPEL, Colombia).

Revenue is generated exclusively through non-commercial channels: membership contributions from the 700+ patient organizations, institutional development funding from AECID (the Spanish Agency for International Development Cooperation), and pharmaceutical sponsorships (Alexion/AstraZeneca Rare Disease, BioMarin, BridgeBio, Genzyme/Sanofi, Pfizer, PTC, Regeneron, Roche, Takeda, UCB, Ultragenyx and others). ALIBER charges no fees for its information, orientation, advocacy or event services, and explicitly does not sell commercial products. Its go-to-market is event-driven — annual congresses, high-level forums, and regional encounters — supplemented by earned media around international observance days such as World Rare Disease Day.

Name

Alianza Iberoamericana de Enfermedades Raras o Poco Frecuentes - ALIBER

Legal name

Alianza Iberoamericana de Enfermedades Raras, Huérfanas o Poco Frecuentes (ALIBER)

Website

https://aliber.org

Company type

Private

Founded year

2013

Operating status

Operating

Headcount range

1–10 employees

Short description

ALIBER is an international non-profit association founded in 2013 in Spain that aggregates over 700 rare disease patient organizations across 19 Ibero-American countries, serving an estimated 47 million affected people through policy advocacy, regional convening, research studies, and a free patient information and orientation service.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy

NAICS

Business Associations (813910)

SIC

Services-Membership Organizations (8600), Services-Misc Health & Allied Services, Nec (8090)

akta.pro industry

PRIMARYHLAJABAN

Data Integration, Interoperability & Reporting (ELR/HIE/CDC/NNDSS)

Healthcare & Life Sciences/Public Health, Government & Regulators/Disease Surveillance, Epidemiology & Outbreak Response

Keywords

• Rare disease advocacy
• Patient organization network
• Health policy coalition
• Ibero-American cooperation
• Orphan disease research

Headquarters

HQ city

Totana

HQ country

Spain

HQ region

Europe

Offices1 record

Markets served

GTM type

B2B

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Membership contributions and institutional funding: ALIBER operates as an international non-profit association (asociación internacional sin ánimo de lucro) supported by member organizations, institutional partners, and collaborating sponsors including pharmaceutical companies and government development agencies (AECID). Revenue is generated through institutional partnerships, sponsorships from the pharmaceutical industry, and membership contributions from patient organizations across Iberoamerica.

Go-to-market motion1 record

Distribution channels3 records

Marketing channels7 records

Core offering

ALIBER is an international non-profit alliance that coordinates over 700 patient organizations across 19 Ibero-American countries to advocate for people affected by rare, orphan, or infrequent diseases (estimated 47 million individuals). Its core offerings include an Information and Orientation Service (SIO) for patients and families, comprehensive socio-sanitary needs studies (ENSERio LATAM and ENSERio Centroamérica), annual Ibero-American congresses and high-level policy forums, and the development of policy frameworks such as the Decalogue of Commitments for rare disease policy in Iberoamerica.

Product overview

ALIBER is a non-profit alliance/network organization (not a technology product company) that coordinates advocacy, research, and support services for rare disease patients across Iberoamerica. The organization operates several core programs: ENSERio LATAM and ENSERio Centroamérica (comprehensive socio-sanitary needs studies providing epidemiological data), SIO ALIBER (Information and Orientation Service for patients and families), and periodic events including the Congreso Iberoamericano de Enfermedades Raras and Foro de Alto Nivel (high-level policy forums). ALIBER also develops policy frameworks like the Decálogo de Compromisos and supports digital platforms like RDCom for diagnosis facilitation. The organization connects over 700 patient organizations in 19 Iberoamerican countries.

Differentiator

Problem solved

Functional benefit

Products and services

• ENSERio LATAM

Quantifiable outcome

• More than 47 million people affected by rare diseases represented across 19 Ibero-American countries
• +2 more outcomes

Named customers2 records

Segments4 records

Ideal customer profiles3 records

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 minor and core.

• Avant DevicesminorStrategic or Co-development Partner · 26 May 2026ALIBER and Avant Devices signed a collaboration agreement to improve mobility and quality of life for people with rare diseases. Avant Devices is a technology company developing assistive mobility solutions, and this partnership aims to leverage technology for rare disease patient welfare.
• Rare Diseases International (RDI)coreStrategic or Co-development PartnerALIBER is a member organization of Rare Diseases International, the global alliance representing people with rare diseases and their families worldwide. This membership provides ALIBER with international legitimacy, participation in UN-level advocacy initiatives, and coordination with other regional alliances (EURORDIS for Europe, etc.) to advance global rare disease policy. RDI's NGO Committee at the UN enables ALIBER to contribute to international rare disease resolutions.
• EURORDIS (European Organisation for Rare Diseases)coreStrategic or Co-development PartnerALIBER collaborates with EURORDIS, the European rare disease alliance, on joint initiatives including World Rare Disease Day campaigns, policy development, and cross-regional exchange of best practices in rare disease care and advocacy.
• International Rare Diseases Research Consortium (IRDiRC)minorStrategic or Co-development PartnerALIBER is affiliated with IRDiRC, contributing to international rare disease research coordination and advocacy efforts.
• Secretaría General Iberoamericana (SEGIB)coreStrategic or Co-development PartnerALIBER operates as an official Ibero-American Network under SEGIB. SEGIB's Secretary General (Andrés Allamand as of 2026) has participated in ALIBER-led rare disease events, and SEGIB supports ALIBER's work to advance rare disease policy across the Ibero-American region.
• FUNHEPA (Fundación Hondureña para la Salud Hepática)coreStrategic or Co-development PartnerFUNHEPA is ALIBER's key partner in Honduras for organizing the V High-Level Forum and XIII Ibero-American Congress on Rare Diseases (July 2026) in Tegucigalpa. The partnership demonstrates ALIBER's model of co-organizing regional events with national patient organizations.
• CREER (Centro de Referencia Estatal de Atención a Personas con Enfermedades Raras y sus Familias)minorStrategic or Co-development PartnerCREER is Spain's national reference center for rare diseases. ALIBER works with CREER as a key institutional ally in Spain for patient services, training, and policy coordination.
• Oranismo Andino de Salud / ORAS-CONHUcoreStrategic or Co-development PartnerALIBER partners with ORAS-CONHU (Organismo Andino de Salud – Hipólito Unanue) for regional health policy initiatives. ORAS-CONHU participated in the III High-Level Forum in Lima (2024), supporting ALIBER's advocacy work with Andean region health ministries.
• Radio Enfermedades RarasminorGTM or Marketing PartnerALIBER is a partner of Radio Enfermedades Raras, a dedicated digital radio platform for rare disease content. This partnership extends ALIBER's multimedia reach and awareness-building capacity across Iberoamerica.

Scale indicators7 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• NORD (National Organization for Rare Disorders): NORD is the established US rare disease umbrella organization, analogous to ALIBER's role for the Ibero-American region. It represents ~300 member organizations and has decades of policy, research, and advocacy infrastructure that benchmark the kind of institutional maturation ALIBER aspires to.
• Orphanet: Orphanet is the global reference portal for rare diseases and orphan drugs, providing encyclopedic disease data, expert directories, and epidemiological resources. It is a complementary infrastructure player that ALIBER's ENSERio studies and SIO service partially overlap with for the Ibero-American region.

Direct peers

• OMER (Organización Mexicana de Enfermedades Raras): OMER is Mexico's national rare disease alliance, led by ALIBER's Vice President Jesús Navarro. It is a national-level peer that shares leadership and operational ties with ALIBER and is a key member of the alliance's network.
• EURORDIS (European Organisation for Rare Diseases): EURORDIS is the European rare disease patient alliance representing 1,000+ patient organizations across 74 countries. It is ALIBER's most direct functional peer — both aggregate patient organizations, run congresses, produce epidemiological studies, and engage governments on rare disease policy. EURORDIS is ALIBER's recognized European counterpart.
• FEDER (Federación Española de Enfermedades Raras): FEDER is Spain's national rare disease federation and the institutional home of ALIBER's President, Juan Carrión. FEDER operates at the national level with a similar mission (advocacy, services, research) and shares leadership and operational DNA with ALIBER.
• ACOPEL (Observatorio de Enfermedades Huérfanas de Colombia): ACOPEL is Colombia's national rare disease observatory and patient alliance, led by ALIBER's Vice President Luz Victoria Salazar. It functions as a national umbrella with comparable advocacy, information, and convening activities.
• EveryLife Foundation for Rare Diseases: EveryLife Foundation is a US-based rare disease advocacy organization focused on accelerating biotech innovation and equitable access policies. It is a peer in the policy advocacy and legislative engagement space where ALIBER operates regionally.
• Canadian Organization for Rare Disorders (CORD): CORD is Canada's national rare disease alliance, comparable in function to ALIBER as a national/regional umbrella for patient organizations. Both serve as policy advocates, event conveners, and research partners within their respective geographies.
• Rare Diseases International (RDI): RDI is the global alliance of rare disease patient organizations, of which ALIBER is a member. RDI operates at the global/UN level — comparable to ALIBER's regional convening role but at a broader geographic scope, and they coordinate on international advocacy.

Regional players

• Federación Colombiana de Enfermedades Raras (FECOER): FECOER is a Colombian rare disease federation with advocacy and patient support activities. It operates at the national level with a similar focus on rare disease policy and patient services in the Latin American context.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• LinkedInlinkedin.com/company/aliber

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles3 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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