Federación Española de Hemofilia

What Federación Española de Hemofilia does

Federación Española de Hemofilia (Fedhemo) is a Spanish non-profit federation founded in 1971 in Madrid, originating from a patient group meeting at Hospital La Paz. It is a national entity whose mission is to improve quality of life for people with hemophilia and other hereditary congenital coagulopathies (including von Willebrand disease, PTTa, PTI, and rare factor deficiencies) and their families, serving an estimated ~3,000 hemophilia patients and ~1,500 other coagulopathy patients across Spain through a national headquarters, 20 federated regional/local associations, and a network of 50+ high-quality treatment centers.

Fedhemo delivers a portfolio of free patient services: psychosocial care (Atención Psicosocial, Hemocional), specialized physiotherapy at the FISHEMO center in Madrid, home delivery of hemophilia medication (Home Delivery), a technical-aids loan bank (Banco de Ayudas Técnicas), employment activation (Antenas de Empleo), and transitional housing (Piso-Hogar) for patients travelling to Madrid for treatment at Hospital La Paz. Its educational arm includes the Campus Fedhemo webinar series, El Experto Responde expert Q&A portal, family/youth residential retreats (Albergues, HemoPeques, HemoJuve, HemoJóvenes), and the Revista Fedhemo publication. The underlying technology is conventional: a WordPress website with The Events Calendar plugin, email-based contact, and standard social media channels (Facebook, X, Instagram, YouTube, LinkedIn), with no proprietary software, APIs, or AI/ML capabilities disclosed.

The federation's revenue model combines voluntary membership ("Hazte Socio"), public donations, recurring corporate sponsorship from at least ten major pharmaceutical companies (CSL Behring, Novo Nordisk, Octapharma, Pfizer, Roche, Sanofi, Sobi, Takeda, Biomarin, Grifols), public grants (including the 0.7% Corporate Tax allocation from the Ministerio de Derechos Sociales y Agenda 2030), and discrete foundation donations (e.g., Fundación Solidaridad Carrefour €30,000 in 2023). All services are offered free of charge to patients. Fedhemo operates inside the Spanish patient-advocacy ecosystem (COCEMFE, FEDER, Plataforma de Organizaciones de Pacientes) and the international hemophilia ecosystem (WFH, EHC, COA, Real Fundación Victoria Eugenia), and is led by president Daniel-Aníbal García Diego, who was co-opted to the WFH board in May 2024.

Name

Federación Española de Hemofilia

Legal name

Federación Española de Hemofilia

Website

https://fedhemo.com

Company type

Private

Founded year

1971

Operating status

Operating

Headcount range

1–10 employees

Short description

Federación Española de Hemofilia (Fedhemo) is a Madrid-based non-profit federation founded in 1971 that supports people with hemophilia and other congenital coagulopathies across Spain through free psychosocial, physiotherapy, housing, and training services delivered via 20 regional member associations.

Ownership category

akta.pro rank

Product category

Patient Advocacy Federation / Hemophilia and Coagulopathy Patient Services

NAICS

Individual and Family Services (6241), Services for the Elderly and Persons with Disabilities (624120)

SIC

Services-Social Services (8300), Services-Membership Organizations (8600)

akta.pro industry

PRIMARYBPAGACAM

Rare Disease & Special Needs Support Organizations

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

Keywords

• Patient association services
• Hemophilia support services
• Rare disease advocacy
• Coagulopathy patient services
• Disability community programs

Headquarters

HQ city

Madrid

HQ country

Spain

HQ region

Europe

Offices3 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Donations and member contributions: Non-profit funding model relying on 'Hazte Socio' (become a member) sign-ups, public donations, and member association fees.
2. Public grants and institutional subsidies: Funding from public sources including the 0.7% of Corporate Tax from the Ministerio de Derechos Sociales y Agenda 2030 (Ministry of Social Rights and Agenda 2030) for disability and awareness campaigns.
3. Corporate sponsorship from pharmaceutical industry: Sponsorship and partnership funding from pharmaceutical companies (CSL Behring, Novo Nordisk, Octapharma, Pfizer, Roche, Sanofi, Sobi, Takeda, Biomarin, Grifols) supporting scholarships, congress attendance, and educational programs.
4. Charitable donations from foundations: One-off donations from charitable foundations such as Fundación Solidaridad Carrefour (€30,000 donation reported in 2023 to benefit 1,000 minors).

Pricing tiers

Go-to-market motion3 records

Distribution channels4 records

Marketing channels12 records

Core offering

Fedhemo is a non-profit federation that provides a coordinated suite of free patient and family services for people with hemophilia and other congenital coagulopathies in Spain, including psychosocial care, specialized physiotherapy, medication home delivery, transitional housing, technical aids loan, employment activation, training/webinars, and family retreats. It also serves as the national advocacy and coordination body for 20 regional hemophilia associations and represents Spanish patients at the WFH and EHC, while engaging with the Sistema Nacional de Salud and the Ministry of Health on equitable access to treatments.

Differentiator

Problem solved

Functional benefit

Brands

• Hemocional: Psychosocial/emotional support space/program of Fedhemo.
• Home Delivery
• Campus Fedhemo
• FISHEMO
• HemoPeques
• HemoJuve / HemoJóvenes

Products and services

• Atención Psicosocial

Quantifiable outcome

• 130 people benefited from Piso-Hogar accommodation in 2024
• +5 more outcomes

Segments5 records

Ideal customer profiles5 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature4 records

Partnerships

26 partnerships are on record, tiered flagship international partner, flagship national partner, major national partner, flagship scientific partner, international program partner, major european partner, major event partner, major media partner, major pharmaceutical partner, minor pharmaceutical partner, major foundation partner, flagship clinical partner, major clinical partner, major medical society partner, minor academic partner and honorary patronage.

• World Federation of Hemophilia (WFH / FMH)flagship international partnerStrategic or Co-development PartnerFedhemo is a National Member Organization (NMO) of the WFH. The Fedhemo president (Daniel-Aníbal García Diego) was co-opted to the WFH board on 20 May 2024. Fedhemo hosted the WFH World Congress 2024 in Madrid (3,000+ delegates from 135 countries) and attended WFH 2026 in Kuala Lumpur (1,900+ participants, 130 countries). Next congress: Prague 2027, Chicago 2028.
• COCEMFE (Confederación Española de Personas con Discapacidad Física y Orgánica)flagship national partnerStrategic or Co-development PartnerFedhemo is part of COCEMFE, with whom it co-runs disability visibility campaigns such as 'Toca que nos vean' and 'Soy mujer y tengo una coagulopatía'. COCEMFE and Fedhemo jointly advocate to the Spanish Government on disability assessment, early retirement, and accessibility.
• FEDER (Federación Española de Enfermedades Raras)major national partnerStrategic or Co-development PartnerFedhemo participates in FEDER to support rare disease advocacy in Spain, including World Rare Disease Day campaigns.
• Plataforma de Organizaciones de Pacientesmajor national partnerStrategic or Co-development PartnerFedhemo is a member organization of the Plataforma de Organizaciones de Pacientes, the umbrella Spanish patient organization platform.
• Real Fundación Victoria Eugenia (RFVE)flagship scientific partnerStrategic or Co-development PartnerRFVE and Fedhemo collaborate closely on scientific and medical-social issues, including joint declarations on ISTH guidelines (May 2024), co-publication of guides on gene therapy and shared decision-making with Takeda, and joint sessions such as 'Vivir con hemofilia hoy'. RFVE is led by Honorary President Dña. Margarita de Borbón.
• Coalición de las Américas (COA)international program partnerStrategic or Co-development PartnerCOA and Fedhemo jointly run a mentorship program (Programa de Mentorías COA-FEDHEMO) supporting patient accompaniment across the Americas and Spain.
• European Haemophilia Consortium (EHC)major european partnerStrategic or Co-development PartnerFedhemo participates in EHC Leadership Conferences (Brussels) for European coagulopathy patient advocacy and policy coordination.
• IFEMA Madridmajor event partnerImplementation/ SI/ Consulting PartnerHosted the WFH World Congress 2024 at IFEMA Pavilion 9 in Madrid, April 21-24, 2024.
• Servimediamajor media partnerGTM or Marketing PartnerServimedia and Fedhemo co-host regular dialogue events for World Hemophilia Day and 50th anniversary, broadcast via Servimedia TV YouTube channel.
• Rochemajor pharmaceutical partnerStrategic or Co-development PartnerRoche sponsors the WFH Congress scholarship program and co-developed the 'Humanizando la hemofilia' project with Hospital La Fe, Fedhemo, and Ashecova. Also collaborated on '¿Cuánto saben los españoles sobre hemofilia?' survey.
• CSL Behringmajor pharmaceutical partnerStrategic or Co-development PartnerCSL Behring sponsors the WFH Congress scholarship program, supports the 'Hemo. Instantes de una vida' exhibition, and is a key Fedhemo collaborator and patron.
• Novo Nordiskmajor pharmaceutical partnerStrategic or Co-development PartnerNovo Nordisk sponsors the WFH Congress scholarship program and publishes the 'Hemofilia en Verano' guide with SETH endorsement and Fedhemo collaboration.
• Octapharmamajor pharmaceutical partnerStrategic or Co-development PartnerOctapharma sponsors the WFH Congress scholarship program and is a Fedhemo patron.
• Pfizermajor pharmaceutical partnerStrategic or Co-development PartnerPfizer sponsors the WFH Congress scholarship program and is a Fedhemo patron.
• Sanofimajor pharmaceutical partnerStrategic or Co-development PartnerSanofi sponsors the WFH Congress scholarship program and is a Fedhemo patron.
• Sobimajor pharmaceutical partnerStrategic or Co-development PartnerSobi sponsors the WFH Congress scholarship program and is a Fedhemo patron.
• Takedamajor pharmaceutical partnerStrategic or Co-development PartnerTakeda co-publishes with Fedhemo and RFVE the 'Tomar decisiones juntos' guide and is a WFH Congress scholarship sponsor.
• Biomarinminor pharmaceutical partnerStrategic or Co-development PartnerBiomarin offered training scholarships to Fedhemo associates and members in 2023.
• Grifolsmajor pharmaceutical partnerStrategic or Co-development PartnerGrifols sponsored the Campus Fedhemo PTI webinar series and is a Fedhemo patron.
• Fundación ONCEmajor foundation partnerStrategic or Co-development PartnerFundación ONCE participates in Fedhemo's dialogues on disability visibility and labor market insertion; ONCE dedicated its December 1, 2021 lottery cupón to Fedhemo's 50th anniversary.
• Hospital Universitario La Paz (Madrid)flagship clinical partnerStrategic or Co-development PartnerHospital La Paz is Fedhemo's principal national clinical reference center where Piso-Hogar patients receive treatment; also houses key hematology leadership (Dr. Víctor Jiménez Yuste).
• Hospital Universitari i Politècnic La Fe (Valencia)major clinical partnerStrategic or Co-development PartnerReference center; collaborates with Fedhemo and Roche on the 'Humanizando la hemofilia' project led by Dr. Santiago Bonanad Boix (Head of Hemostasis and Thrombosis Unit).
• Sociedad Española de Trombosis y Hemostasia (SETH)major medical society partnerStrategic or Co-development PartnerScientific society partner; co-validates Spanish guidelines for hemophilia care; collaborates on webinars, guides, and congresses. María Teresa Álvarez Román became SETH president in November 2024.
• Sociedad Española de Hematología y Hemoterapia (SEHH)major medical society partnerStrategic or Co-development PartnerCo-hosts scientific congresses (SEHH-SETH joint congress); venue for Fedhemo events such as 'Vivir con hemofilia hoy' at SEHH auditorium.
• Universidad Pontificia de Comillasminor academic partnerImplementation/ SI/ Consulting PartnerCollaboration framework under which Fedhemo representatives (e.g., Lourdes Pérez) participate as speakers in university seminars.
• Duquesa de Soria - Dña. Margarita de Borbón (Honorary President of RFVE)honorary patronageOthersHonorary institutional support at the WFH World Congress 2024 Madrid opening ceremony.

Scale indicators9 records

Recent moves7 records

Expansion highlights6 records

Direct peers

• Canadian Hemophilia Society: Canadian national hemophilia patient federation offering advocacy, treatment-center network coordination, chapter-based service delivery and family/youth programming — directly comparable structure to Fedhemo's 20-association federation model.
• The Haemophilia Society: UK national hemophilia patient charity delivering advocacy, information services and community support programs. Closely comparable to Fedhemo in mission, scale and a publicly-funded (NHS) healthcare context.
• Hemophilia Federation of America: US national community-based hemophilia organization focused on advocacy, education and member-association support. Directly comparable in mission and operational mix (advocacy, member associations, education programs).
• National Hemophilia Foundation: US-based national patient federation serving people with hemophilia and other bleeding disorders. Directly comparable to Fedhemo as a national membership-driven federation delivering advocacy, education, scholarships and community programs, with a comparable mix of pharma sponsorship and foundation funding.
• Deutsche Hämophiliegesellschaft (DHG): German national hemophilia patient society providing advocacy, education and self-help group coordination. Comparable to Fedhemo in offering member-association coordination, treatment-center engagement and pharmaceutical-company partnership programs.
• Association française des hémophiles (AFH): French national hemophilia patient association, founded in 1955, providing patient services, advocacy and regional representation. Comparable to Fedhemo as a neighboring Romance-country national federation with similar pharma sponsorship dynamics.
• FEDEMO - Federazione delle Associazioni Emofilici: Italian national federation of hemophilia patient associations, coordinating 30+ regional groups. Closely mirrors Fedhemo's federation-of-associations structure, advocacy role with the Italian NHS, and youth/family programming model.

Regional players

• Coalición de las Américas (COA): Pan-American coalition of bleeding-disorder patient organizations. Direct peer in mission; Fedhemo runs a joint COA–FEDHEMO mentorship program (launched November 2024) and participates in COA's regional training initiatives across Latin America.

Broad incumbents

• World Federation of Hemophilia (WFH): Global umbrella organization for national hemophilia federations. Overlaps Fedhemo's advocacy and educational mandates but at global scope; Fedhemo is itself an NMO of WFH and the federation's president sits on the WFH board.
• European Haemophilia Consortium (EHC): European umbrella of national hemophilia patient organizations. Comparable to Fedhemo in patient-advocacy focus but operating at the EU level via Brussels-based policy engagement; Fedhemo participates in EHC Leadership Conferences.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat6 records

Key risks7 records

Key highlights7 records

Customer concentration

• Xx.com/fedhemo
• YouTubeyoutube.com/channel/UCiDCKehMmgLzx1XuKpbHQFg
• Facebookfacebook.com/FEDHEMO
• LinkedInlinkedin.com/company/fedhemo
• Instagraminstagram.com/fedhemo

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Subsidiaries1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Federación Española de Hemofilia