European Haemophilia Consortium
The European Haemophilia Consortium (EHC) is an international non-profit organisation that represents 45 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’s 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 factor concentrates
- Promoting patients’ rights and raising ethical issues
- Following and influencing developments in European health policy
- Understanding the status of haemophilia 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.
The EHC movie “Haemophilia Stories”, directed by acclaimed and academy award nominated director Goran Kapetanovic, is now available by clicking on the following link: www.haemophiliastories.eu.
The movie was commissioned by the European Haemophilia Consortium to highlight and reflect the diversity in access to care in Europe. It features interviews and personal stories from people with haemophilia in France, United Kingdom, Sweden, Bulgaria and Romania in addition to interviews and commentary from a German clinician and from Brian O Mahony, President of the EHC.