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.

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

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.

Meet Stéphanie Maya Bravo, EHC Administration Officer

We are delighted to introduce you to our latest EHC addition, Stéphanie Maya Bravo, who joined us in October 2024 as Administration Officer.

Big election day at the EHC Conference 2024: all you have to know about it

The European Haemophilia Consortium (EHC) held its annual General Assembly (GA) during the EHC Conference 2024 in Sofia, Bulgaria, from 4 to 6 October.

Executive Summary: EHC Round Table on “Current Issues in von Willebrand Disease”

On 10 September 2024, the EHC hosted its first post-pandemic Round Table on “Current Issues in von Willebrand Disease” in Brussels, Belgium.

Update on Novo Nordisk manufacturing deviation for NovoSeven©, resulting in shortages for NovoEight© and Esperoct©

Mid-June 2024, the EHC, NBDF and WFH were made aware of a manufacturing deviation in the production lines of several products for the treatment of haemophilia and other coagulopathies manufactured by Novo Nordisk in Denmark.

Our events