The European Haemophilia Consortium (EHC) is an international non-profit organisation that represents 47 national patients’ organisations of people with rare bleeding disorders from 27 Member States of the European Union (EU) and most Member States of the Council of Europe.
The EHC represents approximately 90,000 people diagnosed with a rare bleeding condition such as haemophilia, von Willebrand Disease (VWD) and other rare bleeding disorders across Europe. However, it is estimated that many more live with an undiagnosed rare bleeding disorder.
The EHC actively supports its National Member Organisations (NMOs) at national and European levels, and also helps NMOs to engage with each other, with the objectives of:
- Improving quality of life of people living with rare bleeding disorders;
- Improving diagnostic and treatment facilities;
- Ensuring adequate supply of – and access to – safe therapies;
- Promoting patients’ rights and raising ethical issues;
- Following and influencing developments in European health policy;
- Understanding the status of treatment and care in member countries through regular surveys;
- Stimulating research in all fields related to haemophilia and related rare bleeding disorders.
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. The EHC also collaborates closely with other European patient organisations to ensure a strong collective voice for people with rare bleeding disorders.