Federación Argentina de Enfermedades Poco Frecuentes - FADEPOF

What Federación Argentina de Enfermedades Poco Frecuentes - FADEPOF does

FADEPOF (Federación Argentina de Enfermedades Poco Frecuentes) is a second-degree civil non-profit federation founded in 2013 and headquartered in Buenos Aires, Argentina. It aggregates 80+ member patient organizations representing people living with rare diseases (Enfermedades Poco Frecuentes, EPOF) in Argentina, an estimated population of approximately 3.6 million Argentinians. The federation's core functions are policy advocacy, institutional representation, and capacity building for its member organizations, operating under the framework of Argentina's Ley Nacional 26.689 (2011) on rare diseases.

Its principal products and initiatives include the annual INSPIRAR congress, the Observatorio Nacional de EPOF (a national rare disease monitoring platform launched in 2026), and active engagement with international rare disease networks including EURORDIS, RARE Diseases International, and ALIBER. The federation maintains institutional relationships with the Argentine Ministry of Health, the Ministry of Science and Technology, and ANMAT (Argentina's drug and food regulatory agency), and participates in research initiatives such as INSERio LATAM. It operates with a small staff of 7 employees.

FADEPOF's business model is that of a non-profit federation: revenue is derived from membership dues paid by member organizations, supplemented by grants, event-related sponsorships, and project-based funding. As of 2026, the federation is governed by a newly installed Mesa Directiva Nacional (2026-2028) led by President Brenda Torres Melia, and has recently extended its advocacy footprint to provincial jurisdictions (e.g., Chaco) and used litigation to enforce coverage rights for specific conditions such as Polyneuropathy.

Name

Federación Argentina de Enfermedades Poco Frecuentes - FADEPOF

Legal name

Federación Argentina de Enfermedades Poco Frecuentes

Website

https://fadepof.org.ar

Company type

Private

Operating status

Operating

Headcount range

1–10 employees

Short description

FADEPOF is a Buenos Aires-based non-profit federation founded in 2013 that aggregates 80+ Argentine patient organizations to advocate for the estimated 3.6 million Argentinians living with rare diseases, operating under Ley 26.689.

Ownership category

akta.pro rank

Product category

Patient Advocacy & Rare Disease Federation

NAICS

Religious, Grantmaking, Civic, Professional, and Similar Organizations (813), Business, Professional, Labor, Political, and Similar Organizations (8139)

SIC

Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

Keywords

• Rare disease advocacy
• Patient federation services
• Public health policy
• Nonprofit patient organizations
• Healthcare capacity building

Headquarters

HQ city

Buenos Aires

HQ country

Argentina

HQ region

Latin America

Offices1 record

Markets served

GTM type

B2B

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Member Organization Dues: FADEPOF is a second-degree civil organization composed of non-profit patient organizations. Members contribute to sustain the federation's operations and advocacy work.

Go-to-market motion1 record

Distribution channels1 record

Marketing channels5 records

Core offering

FADEPOF is a second-degree civil federation that brings together more than 80 non-profit patient organizations across Argentina to advocate for the approximately 3.6 million people living with rare diseases (Enfermedades Poco Frecuentes, EPOF). It delivers its mission through three pillars — capacity building for member organizations, influence on public policy with national and provincial governments, and strategic alliances with international rare-disease networks such as EURORDIS, ALIBER, Rare Diseases International, and IAPO.

Product overview

FADEPOF is a civil federation of second degree composed of patient organizations and groups working with rare diseases. The organization does not offer a technology product but rather provides advocacy services, policy influence, capacity building for member organizations, and operates the National Observatory of Rare Diseases (Observatorio Nacional de EPOF). Their activities include promoting public policies, generating alliances, developing research publications, and providing information resources for patients with rare diseases in Argentina.

Differentiator

Problem solved

Functional benefit

Products and services

• Observatorio Nacional de las EPOF
• INSPIRAR Annual Event
• ENSERio LATAM Study Participation Federation participation in the Latin American ENSERio study on the situation of people with rare diseases, providing regional data and policy analysis to inform evidence-based advocacy.

Named customers1 record

Segments2 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Eleven partnerships are on record, tiered core and minor.

• Ministerio de Salud de la Nación ArgentinacoreStrategic or Co-development PartnerGovernment partner for the National Rare Diseases Program (Programa Nacional de EPOF). Collaborates on public policy development and implementation of Ley Nacional 26.689 for rare disease patient rights.
• Ministerio de Ciencia y TecnologíacoreStrategic or Co-development PartnerPartner for research initiatives and scientific collaboration related to rare diseases in Argentina.
• ANMAT (Administración Nacional de Medicamentos, Alimentos y Tecnología Médica)coreStrategic or Co-development PartnerRegulatory agency partner for issues related to medications, food, and medical technology access for rare disease patients.
• EURORDIS (Rare Diseases Europe)coreStrategic or Co-development PartnerEuropean umbrella organization for rare disease patient organizations. FADEPOF participates in international initiatives like Rare Barometer survey and benefits from global research and advocacy frameworks.
• RARE Diseases InternationalcoreStrategic or Co-development PartnerGlobal umbrella organization for rare disease patient organizations worldwide. Supports FADEPOF's international advocacy and provides global perspective on rare disease policies.
• ALIBER (Alianza Iberoamericana de Enfermedades Raras o Poco Frecuentes)coreStrategic or Co-development PartnerIberoamerican alliance for rare diseases. FADEPOF collaborates on regional initiatives including ENSERio LATAM study and shares best practices across Latin America.
• Foro del Sector SocialminorStrategic or Co-development PartnerCivil society forum that brings together organizations working on social issues, providing a broader coalition for advocacy efforts.
• BIORED SURminorStrategic or Co-development PartnerRegional network possibly related to rare disease research or healthcare networks in South America.
• CSEM (Center for Statelessness)minorOthersPartnership for issues related to disability recognition and social protection for rare disease patients.
• Rare Disease DayminorGTM or Marketing PartnerGlobal awareness campaign for rare diseases. FADEPOF participates in and promotes the annual observance day in Argentina.
• IAPO (International Alliance of Patients' Organizations)minorStrategic or Co-development PartnerGlobal patient organization alliance providing support and networking opportunities for rare disease advocacy.

Scale indicators5 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• NORD (National Organization for Rare Disorders): US umbrella patient advocacy organization for rare diseases. Closest functional analogue to FADEPOF in terms of federation model, policy advocacy, and member organization support.
• EURORDIS – Rare Diseases Europe: European umbrella federation of rare disease patient organizations. Same role as FADEPOF but at continental scale — model and partner for FADEPOF's international advocacy and Rare Barometer participation.

Regional players

• Federación Mexicana de Enfermedades Raras (FEMEXER): Mexican federation of rare disease patient organizations; LATAM counterparty to FADEPOF and fellow ALIBER member, useful as a regional benchmark though serving a different national population.

Direct peers

• Canadian Organization for Rare Disorders (CORD): Canada's national network for organizations representing people with rare disorders. Direct functional peer: federation of patient organizations driving national policy and access outcomes.
• Rare Diseases International: Global alliance of rare disease patient organizations; FADEPOF is already a partner/member. Operates as a meta-federation across national umbrellas — directly comparable in mission and constituency.
• ALIBER (Alianza Iberoamericana de Enfermedades Raras): Iberoamerican alliance of rare disease federations. FADEPOF is a member and collaborator (ENSERio LATAM). Regional peer in the same linguistic and regulatory orbit.
• Rare Voices Australia (RVA): Australian national rare disease advocacy alliance. Functions as a federation/peak body for patient organizations — same operating model as FADEPOF, different geography.
• Federación Española de Enfermedades Raras (FEDER): Spanish federation of rare disease patient organizations. Direct peer given Spanish-speaking alignment, comparable legal framework (national rare disease law), and parallel role as ALIBER partner alongside FADEPOF.

Emerging players

• Findacure: UK-based emerging charity focused on capacity building for rare disease patient groups. Comparable to FADEPOF's 'desarrollamos capacidades' function, though smaller in scope.

Others

• IAPO (International Alliance of Patients' Organizations): Global alliance of patient organizations across disease areas, including rare diseases. Listed as FADEPOF partner; operates at a broader (non-rare-disease-exclusive) level but shares the patient advocacy umbrella model.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights7 records

Customer concentration

• LinkedInlinkedin.com/company/federaci%C3%B3n-argentina-de-enfermedades-poco-frecuentes-fadepof

Revenue estimate

Valuation estimate

Number of profiles

Profiles5 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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