EHC - European Haemophilia Consortium

What EHC - European Haemophilia Consortium does

The European Haemophilia Consortium (EHC) is a Brussels-based international non-profit patient-advocacy organisation founded in 1989, representing 49 National Member Organisations (NMOs) for people with rare bleeding disorders across the WHO European region, including all 27 EU Member States and most Council of Europe Member States. Its constituency is approximately 120,000 diagnosed individuals living with haemophilia A and B, von Willebrand Disease (VWD), factor deficiencies (I, II, V, VII, X, XI, XIII), platelet disorders such as Glanzmann Thrombasthenia and Bernard-Soulier Syndrome, Bleeding Disorder of Unknown Cause (BDUC), and inhibitors, along with their families, caregivers, and treating healthcare professionals.

EHC's operational stack centres on community, education, and policy infrastructure rather than commercial technology. It operates the EHC Community platform (community.ehc.eu) for member engagement, the EHC Academy (academy.ehc.eu) for legislative monitoring and education, and the main ehc.eu website in English, French, Russian, and Croatian. Its service portfolio comprises four annual in-person events - the Annual Conference, Leadership Conference, Youth Leadership Workshop, and New Technologies Conference - supplemented by topic-specific Round Tables, capacity-building workshops (HTA, leadership, new technologies), grant programmes (activity grants, physical-activity grants, round-table travel grants up to €600 per representative), and the Youth Fellowship Programme. EHC holds formal accreditation with the European Medicines Agency (EMA), including representation on the Committee for Orphan Medicinal Products (COMP), and is a member of ERN-EuroBloodNet, the EU HTA Stakeholder Network, the Critical Medicines Alliance, and the European Directorate for the Quality of Medicines and HealthCare (EDQM). Recent content launches include the NMO Handbook on VWD (January 2026) and the Project Elevate Her awareness partnership (April 2026).

EHC's revenue model is non-commercial: it is funded through NMO membership fees, EU and institutional grants, pharmaceutical-industry partnerships, conference registration fees, and grants channelled back to NMOs. Pricing signals show tiered conference registration (industry and medical delegates pay higher fees; NMO and patient delegates receive dinner-ticket waivers and a €80 day pass) and grant co-financing rather than commercial product pricing. The organisation is governed by its NMO members through a Steering Committee and General Assembly, with no venture capital, private equity, or public ownership. GDPR compliance is maintained, with data hosted in Belgium behind firewall and password-protected networks.

Name

EHC - European Haemophilia Consortium

Legal name

European Haemophilia Consortium (EHC)

Website

https://ehc.eu

Company type

Private

Founded year

1989

Operating status

Operating

Headcount range

11–50 employees

Short description

The European Haemophilia Consortium (EHC) is a Brussels-based international non-profit, founded in 1989, that represents 49 national patient organisations for people with rare bleeding disorders across the WHO European region, serving approximately 120,000 diagnosed individuals and engaging EU institutions on treatment access.

Ownership category

akta.pro rank

Product category

Patient Advocacy Services

NAICS

Business Associations (813910), Business, Professional, Labor, Political, and Similar Organizations (8139)

SIC

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

akta.pro primary industry

Health Systems Strengthening & Universal Health Coverage (UHC) (BPADAIAE)

akta.pro secondary industry

Health Systems Strengthening & Universal Health Coverage (UHC) Partnerships (HLAJAOAL)

Keywords

• Patient advocacy services
• Rare bleeding disorders
• Haemophilia community
• Health policy advocacy
• Non-profit consortium

Headquarters

HQ city

Brussels

HQ country

Belgium

HQ region

Europe

Offices1 record

Markets served

GTM type

B2B

Offering type

Services

Cost components

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

Pricing tiers

Distribution channels4 records

Marketing channels8 records

Core offering

The European Haemophilia Consortium (EHC) is a non-profit patient advocacy organisation that represents 49 national patient organisations for people with rare bleeding disorders across the WHO European region. It delivers advocacy at EU level (EMA, HTA, EU Pharmaceutical Legislation), runs annual conferences and round tables, provides educational programmes (Health Economics Course, Youth Leadership Workshop, New Technologies Workshop), and administers grants and capacity-building support to its National Member Organisations.

Product overview

EHC is an international non-profit patient organization representing 49 national patient organisations for rare bleeding disorders. The organization does not offer a commercial tech product but provides a suite of community platforms, educational programmes, events, and grants. Key offerings include the EHC Community Platform and EHC Academy for online engagement, annual conferences (Annual Conference, Leadership Conference, New Technologies Conference) and round tables for knowledge-sharing, Health Economics and Leadership workshops for capacity building, Youth Fellowship Programme for young members, and Activity/Physical Activity/Travel Grants for member support. The organization also publishes educational resources including the Comprehensive VWD Handbook.

Differentiator

Problem solved

Functional benefit

Brands

• EHC Community: Online community platform for EHC members and stakeholders at community.ehc.eu
• EHC Academy
• #ThisWay
• ERIN (European Rare and Inhibitor Network)

Products and services

• EHC Community Platform Online platform for the EHC community providing access to events, focus-area groups, and networking opportunities for people with bleeding disorders and member organisations.
• EHC Academy Educational platform offering legislative updates, policy analysis, and training resources for EHC National Member Organisations and the broader bleeding disorders community.
• EHC Annual Conference Annual patient-facing conference delivering state-of-the-art scientific information combined with community-driven thematic content on bleeding disorders; brings together patient advocates, healthcare professionals, researchers, and industry experts.
• EHC Leadership Conference Annual event dedicated to EHC National Member Organisations, fostering knowledge-sharing and allowing participants to learn from each other's strengths, experiences, and best practices.
• EHC New Technologies Conference Conference providing updates on medical advancements in rare bleeding disorders, focusing on the technology behind new products and strategies to ensure patient access.
• EHC Round Tables Stakeholder round table discussions bridging European health policy with treatment access and care issues for people with bleeding disorders.
• Health Economics Course Online course designed to develop understanding of the economics of bleeding disorders treatment in Europe and help the EHC community advocate for their treatment of choice.
• Youth Leadership Workshop Multi-year workshop series focused on youth leadership development within the bleeding disorders community.
• New Technologies Workshop Multi-year workshop series focused on health technology assessment (HTA) and new technologies in bleeding disorders treatment.
• Youth Fellowship Programme Paid internship programme for young members of EHC National Member Organisations, combining work at the EHC office in Brussels with teleworking for up to six months.
• NMO Handbook: Comprehensive Guide to VWD Comprehensive handbook providing clear and accessible information on von Willebrand Disease including symptoms, diagnosis, testing methods, treatment options, menstrual health management and related complications.
• EHC Activity Grants Co-financing support for EHC National Member Organisations to launch or maintain projects, programmes, or activities benefiting members.
• EHC Physical Activity Grants Co-financing support for NMO activities designed to improve physical capacity of people living with rare bleeding disorders.
• EHC Travel Grants Travel cost coverage for NMO representatives to participate in EHC Round Tables and other events.

Quantifiable outcome

• 49 national member organisations represented across the WHO European region, including all 27 EU Member States
• +5 more outcomes

Segments5 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration7 records

Partnerships

19 partnerships are on record, tiered core, moderate and minor.

• Platform of Plasma Protein Users (PLUS)coreStrategic or Co-development PartnerEHC is a member of PLUS, a coalition of patient organisations whose members depend on plasma-derived medicinal products. PLUS issues joint statements on plasma security, product safety, and critical medicines policy. EHC co-signed the PLUS statement on PDMP (Plasma-Derived Medicinal Products) safety following the January 2025 consensus conference.
• World Federation of Hemophilia (WFH)coreStrategic or Co-development PartnerEHC is partnered with WFH, collaborating on global advocacy efforts including a letter to the WHO Director-General supporting a World Health Assembly resolution on haemophilia and other bleeding disorders. EHC is one of 76 organisations to join this global call. WFH and EHC coordinate national-level support for member organisations.
• European Association for Haemophilia and Allied Disorders (EAHAD)coreStrategic or Co-development PartnerEHC and EAHAD issued a joint support statement regarding EMA's draft guideline on clinical requirements for non-replacement therapy in haemophilia A and B. EAHAD, EHC, and the European Hematology Association (EHA) collaborate on clinical and regulatory guidance to ensure patient-centred approaches.
• European Hematology Association (EHA)coreStrategic or Co-development PartnerEHC collaborates with EHA alongside EAHAD on joint statements addressing EMA clinical guidance for non-replacement therapies in haemophilia. EHA brings scientific and clinical expertise that complements the EHC's patient advocacy perspective in regulatory engagement.
• EURORDIS – Rare Diseases EuropecoreStrategic or Co-development PartnerEHC partnered with EURORDIS and the European Patients' Forum (EPF) to issue a joint statement in March 2025 calling on European decision-makers to guarantee strong and meaningful patient involvement in EMA, including retaining voting rights for patient representatives on the CHMP and PRAC committees during EU pharmaceutical legislation negotiations.
• European Patients' Forum (EPF)coreStrategic or Co-development PartnerEHC and EPF joined forces alongside EURORDIS and 70+ patient organisations to advocate for patient voting rights within EMA committees during the EU pharmaceutical legislation revision. EPF and EHC share the goal of meaningful patient involvement in health technology assessment and regulatory processes.
• European Medicines Agency (EMA)coreOthersEHC holds formal accreditation to participate in EMA activities and is represented on the Committee for Orphan Medicinal Products (COMP). EHC engages in EMA consultations on clinical guidelines, including the public consultation on non-replacement therapy requirements for haemophilia A and B.
• ERN-EuroBloodNetcoreStrategic or Co-development PartnerEHC is represented within ERN-EuroBloodNet, the European Reference Network for Rare Haematological Diseases. This network connects healthcare providers and patient organisations across Europe to improve care for rare blood disorders.
• Critical Medicines AlliancecoreStrategic or Co-development PartnerEHC participates in the EU Critical Medicines Alliance, advocating for plasma security and inclusion of critical bleeding disorder treatments (such as von Willebrand factor) in the EU Critical Medicines List to prevent shortages.
• HTA Stakeholder NetworkcoreStrategic or Co-development PartnerEHC is a member of the EU HTA Stakeholder Network, engaging in the development and implementation of joint clinical assessments (JCA) under the EU HTA Regulation. EHC co-authored a 10-key recommendation document for patient involvement in JCAs.
• European Directorate for the Quality of Medicines and HealthCare (EDQM)moderateOthersEHC maintains close ties with the EDQM, an organisation within the Council of Europe, contributing to standards and policies affecting bleeding disorder treatment quality and availability across Europe.
• EUPATImoderateStrategic or Co-development PartnerEHC partners with EUPATI (European Patients' Academy on Therapeutic Innovation) to advance patient education and involvement in medicines research and development, complementing the EHC's own Academy platform.
• Transform AlliancemoderateStrategic or Co-development PartnerEHC partners with the Transform Alliance, a collaborative initiative focused on transforming care for people with bleeding disorders, sharing resources and advocacy strategies.
• International Society on Thrombosis and Haemostasis (ISTH)moderateStrategic or Co-development PartnerEHC collaborates with ISTH on scientific and clinical knowledge exchange, conferences, and educational content related to thrombosis and haemostasis research and practice.
• EASL Patient SynergiesminorStrategic or Co-development PartnerEHC is partnered with EASL Patient Synergies, contributing to broader patient advocacy networks within hepatology and related bleeding disorder intersections.
• Project Elevate HermoderateGTM or Marketing PartnerEHC has partnered with Project Elevate Her, a global multi-year initiative launched by Maia Meier, who aims to become the first woman with a bleeding disorder to complete all Seven Summits. The partnership raises awareness for women and girls living with bleeding disorders.
• Conference Organisers LimitedcoreImplementation/ SI/ Consulting PartnerConference Organisers Limited (Dublin, Ireland) acts as the conference secretariat for EHC Annual Conferences and other events, managing registration (via Eventsair platform), logistics, payment processing (Global Payments – Realex Payments Holding Ltd), and visa support documentation.
• Drag'nSurveycoreTechnology or IntegrationEHC uses Drag'nSurvey for event registration forms and survey distribution. Drag'nSurvey collects personal data (identifying information, passport details for events at the European Parliament, food allergies, treatment needs) for EHC events and surveys.
• Global Payments – Realex Payments Holding LtdcoreTechnology or IntegrationGlobal Payments – Realex Payments Holding Ltd provides the online payment service for EHC Annual Conference registration, meeting high-security standards. Payment via credit card (Visa, Mastercard) and bank transfer is supported.

Scale indicators3 records

Recent moves6 records

Expansion highlights5 records

Others

• International Society on Thrombosis and Haemostasis (ISTH): Global scientific society for thrombosis and haemostasis; collaborates with EHC on education and conferences and represents the scientific counterparty rather than a competing patient voice.
• European Hematology Association (EHA): European scientific and clinical association for haematology; co-signs joint statements with EHC and EAHAD on EMA clinical guidance, positioning it as the medical counterpart rather than a direct patient-organisation competitor.

Direct peers

• Haemophilia Society (UK): UK national member organisation of EHC representing people with bleeding disorders; comparable advocacy, grants, youth and information services at national level.
• National Hemophilia Foundation (NHF): US national patient organisation for people with bleeding disorders; structurally equivalent to one of EHC's 49 NMOs but operating at national scale, providing a useful benchmark for NMO programming, fundraising and chapter models.
• European Patients' Forum (EPF): Pan-European umbrella of patient organisations across disease areas; co-advocate with EHC on EMA patient voting rights and HTA, sharing similar EU-level policy and member-service functions.
• World Federation of Hemophilia (WFH): Global umbrella patient organisation for people with haemophilia and other inherited bleeding disorders; the international counterpart to EHC, with which it coordinates national-level support and joint advocacy such as the WHO World Health Assembly resolution call.
• European Association for Haemophilia and Allied Disorders (EAHAD): European professional association for clinicians and researchers in bleeding disorders; partner of EHC on joint statements to EMA and a natural peer given overlapping membership (haematologists, nurses, physiotherapists).
• EURORDIS - Rare Diseases Europe: Pan-European alliance of rare-disease patient organisations; EHC is a member and collaborates on EU pharmaceutical legislation, EMA patient involvement and HTA, making it a close peer in advocacy remit and EU policy engagement.

Regional players

• Haemophilia Foundation Australia: Australian national patient organisation for people with bleeding disorders; WFH national member organisation and a structural peer to EHC's NMOs in a different jurisdiction.
• Canadian Hemophilia Society: Canadian national patient organisation for inherited bleeding disorders; mirrors EHC's national-member role in a different geography and provides peer benchmarking on chapter services and data collection.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks4 records

Key highlights6 records

Customer concentration

• LinkedInlinkedin.com/company/ehc-european-haemophilia-consortium

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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Frequently asked questions about EHC - European Haemophilia Consortium