Federacion Colombiana de Enfermedades Raras

What Federacion Colombiana de Enfermedades Raras does

Federacion Colombiana de Enfermedades Raras (FECOER) is a non-profit patient advocacy federation founded in 2011 and headquartered in Bogotá, Colombia. The organization unites more than 30 rare disease patient associations and represents approximately one million patients with rare diseases (enfermedades raras) in Colombia, an estimated 3.8 million-person addressable population. FECOER's activities are focused on patient representation, defense of the right to health, legal support against barriers to care, awareness campaigns (notably World Rare Disease Day commemorations across multiple cities), and legislative advocacy around Law 1392 of 2010 and its implementing resolutions.

FECOER does not operate any technology products or commercial services. There is no core technology platform, no API or SDK, no patents or trademarks, and no disclosed software products. Its core "deliverables" are policy influence, legal advocacy, knowledge dissemination through its website and social media (Facebook, Twitter, Instagram, YouTube), and coordination of federated member organizations. The organization has contributed to formal regulatory milestones, including the 2019 inclusion of rare diseases in the UN Political Declaration on Universal Health Coverage and a Colombian Constitutional Court ruling on Article 72 of the National Development Plan.

The federation's business model is non-commercial. Revenue is generated through donations from individuals and organizations and membership contributions from federated patient associations, channeled in part through a Bancolombia savings account. There is no pricing model and no fees charged for services. Distribution of support and representation is executed via the federated member network across Colombia, with strategic alliances to international bodies (EURORDIS, RDI, IAPO, OEA) and research networks (Bioredcol) supporting its advocacy and data efforts.

Name

Federacion Colombiana de Enfermedades Raras

Legal name

Federacion Colombiana de Enfermedades Raras

Website

https://fecoer.org

Company type

Private

Founded year

2011

Operating status

Operating

Short description

Federacion Colombiana de Enfermedades Raras (FECOER) is a non-profit patient advocacy federation founded in 2011 in Bogotá, Colombia, that unites over 30 rare disease associations and represents approximately one million patients through policy advocacy, legal support, and awareness campaigns.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Rare Disease Representation Services

NAICS

Business Associations (813910), Professional Organizations (81392)

SIC

Services-Membership Organizations (8600)

akta.pro industry

PRIMARYBPAGACAM

Rare Disease & Special Needs Support Organizations

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

SECONDARYHLAJAJAE

Disease Registries (Cancer, Immunization, Rare Disease, etc.)

Healthcare & Life Sciences/Public Health, Government & Regulators/Health Statistics, Vital Records & Population Health Analytics

Keywords

• Rare disease advocacy
• Patient federation services
• Healthcare policy advocacy
• Patient representation services
• Rare disease awareness

Headquarters

HQ city

Bogotá

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. Donations and Membership Contributions: FECOER generates revenue through donations from individuals and organizations, as well as membership fees from federated patient associations. The organization accepts donations through Bancolombia savings account.

Go-to-market motion1 record

Distribution channels1 record

Marketing channels4 records

Core offering

FECOER is a non-profit patient advocacy federation that unites and represents rare disease patient associations across Colombia. The organization provides patient representation before public and private institutions, legal support for healthcare access disputes, policy advocacy (notably around Law 1392 of 2010), and awareness campaigns including annual World Rare Disease Day commemorations. FECOER coordinates a federated network of more than 30 patient organizations serving approximately one million rare disease patients in Colombia.

Product overview

Federacion Colombiana de Enfermedades Raras (FECOER) is a patient advocacy federation focused on representing and supporting individuals with rare diseases in Colombia. The organization does not offer technology products or services; instead, it provides advocacy, representation, policy influence, patient support, awareness campaigns, and educational resources related to rare diseases. FECOER connects patient organizations, engages in legislative advocacy (such as Law 1392 of 2010), organizes events like World Rare Disease Day commemorations, and facilitates knowledge sharing among patients, families, healthcare professionals, and government entities.

Differentiator

Problem solved

Functional benefit

Products and services

• Patient Representation and Advocacy Services Representation of rare disease patients before public and private institutions in Colombia, including defense of patient rights (particularly the right to health) and legal support for patients facing barriers to care.
• Federated Member Network Coordination
• World Rare Disease Day Awareness Events Annual awareness campaign and commemorative events held on February 28th across multiple Colombian cities to raise awareness and visibility for rare diseases.
• Rare Disease Healthcare Access Complaint Channel Online complaint submission channel allowing rare disease patients to report barriers to healthcare access through a Google Forms-based intake linked from the federation's website.

Quantifiable outcome

• FECOER achieved inclusion of rare diseases in the UN Political Declaration on Universal Health Coverage in September 2019

Segments3 records

Ideal customer profiles3 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 major and minor.

• Rare Diseases International (RDI)majorStrategic or Co-development Partner · 23 September 2019FECOER participated in advocacy efforts coordinated by RDI to include rare diseases in the UN Political Declaration on Universal Health Coverage, contributing a formal letter of support from Colombia.
• UN NGO Committee for Rare DiseasesmajorStrategic or Co-development Partner · 23 September 2019FECOER participated in this UN committee's advocacy efforts for global rare disease policy inclusion.
• Organización de Estados Americanos (OEA)majorStrategic or Co-development PartnerOEA is listed as a strategic ally of FECOER, indicating collaboration on rare disease advocacy at the inter-American level.
• International Alliance of Patients' Organizations (IAPO)majorStrategic or Co-development PartnerIAPO is a global patient organization alliance that invited FECOER to strengthen regional health NGOs in Latin America, hosting regional workshops in Bogotá.
• EURORDIS-Rare Diseases EuropemajorStrategic or Co-development PartnerEURORDIS coordinated global advocacy efforts that FECOER contributed to, resulting in the historic inclusion of rare diseases in the 2019 UN Political Declaration.
• Fundación Bolívar DaviviendaminorOthersRecognized FECOER in November 2016 as an organization committed to accountability and transparency.

Scale indicators4 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• Orphanet: Established European reference portal for rare diseases and orphan drugs. Comparable mission area (rare-disease information, registries, classification) but operates at continental scale with a research-and-data orientation rather than patient-advocacy federation model.
• International Alliance of Patients' Organizations (IAPO): Global alliance of patient organizations across all disease areas. Overlapping patient-advocacy mission and existing FECOER strategic partner; broader scope than FECOER but serves the same constituency.

Direct peers

• EURORDIS-Rare Diseases Europe: European umbrella federation of rare-disease patient organizations — directly analogous mission and structure to FECOER. EURORDIS is already an active strategic partner of FECOER in UN advocacy, making it the most comparable peer.
• Rare Diseases International (RDI): Global alliance of rare-disease patient organizations. RDI is a direct peer and existing FECOER strategic ally coordinating the same UN-level advocacy work that FECOER participates in.
• NORD (National Organization for Rare Disorders): U.S. umbrella patient advocacy organization for rare diseases. Same federation-of-associations model serving a single national market with policy advocacy and patient-support functions directly comparable to FECOER.
• Federación Española de Enfermedades Raras (FEDER): Spanish national federation of rare-disease patient associations. Closely mirrors FECOER's structure and Spanish-language advocacy profile; serves as the natural Iberian/Latin reference point.
• Canadian Organization for Rare Disorders (CORD): Canadian national alliance of patient organizations, clinicians, and researchers for rare diseases. Closely matches FECOER's national-federation structure and policy-advocacy mandate in a single-country context.

Emerging players

• EveryLife Foundation for Rare Diseases: U.S.-based rare-disease advocacy organization focused on accelerating biotech innovation for rare diseases. Comparable in policy-advocacy focus but with a more translational-research orientation than FECOER's patient-services emphasis.
• Alianza Iberoamericana de Enfermedades Raras (ALIBER): Ibero-American umbrella network for rare-disease organizations spanning Spain, Portugal, and Latin America. Directly relevant as the natural regional coordination body for Latin American rare-disease advocacy that FECOER could anchor or work alongside.

Regional players

• Federación Argentina de Enfermedades Poco Frecuentes (FADEPOF): Argentine counterpart federation of rare-disease patient organizations. Operates with the same national-federation model in a neighboring Latin American country, providing a direct regional peer for benchmarking and potential collaboration.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks4 records

Key highlights6 records

Customer concentration

• Xx.com/fecoer
• YouTubeyoutube.com/channel/UCzc_jj7rqqPOCp9qpVNjebg
• Facebookfacebook.com/fecoer
• Instagraminstagram.com/fecoer21

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 Federacion Colombiana de Enfermedades Raras