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Advocacy Materials

The EHC works on behalf of all patients with congenital bleeding disorders in Europe to improve access to treatment and care, as well as the quality of life for patients through partnerships and advocacy.

The EHC plays a unique role in the European bleeding disorder environment as a reliable and expert patient organisation, engaging directly on public health policy with EU institutions – particularly the European Commission and the European Medicines Agency – the Council of Europe, through its Directorate for the Quality of Medicines and Healthcare (EDQM), the United Nations Development Program, and the European Reference Network ‘EuroBloodNet’.

Through our advocacy efforts, EHC strives to influence public policy in order to continue improving individual and community health, reducing health disparities across Europe and in our National Member Organisations (NMOs).

Principles of Care

There have been major advances in the understanding and treatment of patients with bleeding disorders in recent times. As the management of bleeding disorders is complex, it is essential that we work to ensure that patients have access to a range of healthcare services provided by an expert team of multidisciplinary specialists.

The European and International bleeding disorders community of healthcare professionals (HCPs) and patients have on several occasions jointly defined practical optimum standards for ensuring and harmonising treatment and care for patients with bleeding disorders.

These principles of care encompass fundamental guidelines and standards that guide healthcare professionals to help ensure the delivery of high-quality, patient-centered care. These principles are grounded in ethical standards and evidence-based best practices, ultimately providing a commitment to improving patient outcomes.

European Principles of Care for Women and Girls with Bleeding Disorders

European Principles of Haemophilia Care

European Principles of Inhibitor Management (EPIM)

European principles of care for physiotherapy provision for persons with inherited bleeding disorders

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Other Materials

Surveys

The EHC annual surveys help us to gather data and real-world evidence informing our work and feeding into consensus recommendations and other decision-making processes. We actively partner closely with broader policy groups including Rare Diseases Europe, the European Patients’ Forum and doctor/trade associations to ensure that the data we collect and analyse can be used where appropriate as effective advocacy tools and resources for our patients.

Completed Surveys

An evaluation of the current methodology for funding of national haemophilia patient organisations, 2016 – MONOGRAPH

Ageing Survey, 2022

Survey of Coagulation factor concentrates tender and procurement procedures in 38 countries, 2015 – PAPER

Haemophilia Care in Europe – a survey of 19 countries, 2010 – PAPER

Haemophilia Care in Europe – a survey of 35 countries, 2013 – INFOGRAPHIC

Haemophilia Care in Europe – a survey of 35 countries, 2013 – PAPER

Hepatitis C and Bleeding Disorders in Europe, 2018 – PAPER