European Haemophilia Consortium (EHC)

Empowering Lives
Uniting Voices

The European Haemophilia Consortium (EHC) is an international non-profit organisation representing 48 national patient organisations for people with rare bleeding disorders located in the World Health Organisation (WHO) European region including 27 Member States of the European Union and most Member States of the Council of Europe.

Fraudulent emails claiming to be from the EHC leadership are being sent to members of our community, requesting financial support on behalf of our association.

As the EHC will never ask for money transfers, please do not engage with these emails and delete them immediately. Please also note that all official communications from the EHC Steering Committee and Staff only come from email addresses within the @ehc.eu domain.

For your safety, if you receive any suspicious emails or have any doubts, do not hesitate to contact us either at [email protected] or [email protected]. We urge you to remain vigilant and always verify the sender’s email address.

About us

Our mission and objectives

The EHC represents approximately 120,000 people diagnosed with rare bleeding conditions such as haemophilia, von Willebrand Disease (VWD), and other extremely rare bleeding disorders. However, experts estimate that many more live with an undiagnosed rare bleeding disorder.

The EHC draws on the knowledge of patients, healthcare professionals, the scientific community, the European institutions, and the pharmaceutical industry to share expertise within Europe.

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Bleeding Disorders

Factor I (Fibrinogen) Deficiency

Factor II (Prothrombin) Deficiency

Factor V Deficiency

Combined Factor V and Factor VIII Deficiency

Factor VII Deficiency

Factor VIII Deficiency (Haemophilia A)

Factor IX Deficiency (Haemophilia B)

Factor X Deficiency

Factor XI Deficiency

Factor XIII Deficiency

Glanzmann Thrombasthenia

Storage Pool Deficiencies

von Willebrand Disease

Get involved

Membership

The EHC National Member Organisations (NMOs) vary significantly in population, access to treatment and care, and socioeconomic status. We become more effective by sharing our experiences, knowledge and ideas, and working together.

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Advocacy

The EHC is formally engaged in European health policy-making and works closely with key partners and coalitions.

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Our news and insights

EHC publishes the first edition of Public Policy Review in 2025

This publication is entirely developed by the EHC to inform its National Member Organisations about the rapidly changing landscape of health policy and legislative developments which have a direct impact on the bleeding disorders community.

EHC and Kedrion held a workshop on Factor X deficiency

On 3-4 February, in Italy, the EHC and Kedrion organised a workshop on Factor X (FX) deficiency, bringing together patient representatives and healthcare providers.

EHC publishes the first edition of Novel Treatment Review in 2025

The EHC released the first 2025 issue of its Novel Treatment Review (NTR), a periodic review of novel treatments in rare bleeding disorders.

EHC held its 2025 Strategic Retreat

The European Haemophilia Consortium (EHC) successfully held its 2025 Strategic Retreat on January 18–19 in Brussels. This key event brought together the EHC Steering Committee, Medical Advisory Group and thematic committee representatives, and staff.

Celebrating the end of 2024: a message from the EHC President

As we reflect on the past year, the EHC is deeply grateful for the dedication of our NMOs, partners, and community. Let’s move forward with renewed energy!

The EHC responded to the European Commission’s consultation on the implementation act on Joint Scientific Consultation for Medicinal Products

The EHC welcomed the opportunity to contribute to the European Commission’s public consultation on the draft implementing regulation on Joint Scientific Consultations (JSC) for Medicinal Products, for which we issued nine recommendations.

Our events