European Haemophilia Consortium
-
Verbände
Organisationsform
-
Europäische Union | Gesundheit
Organisationskategorie
The European Haemophilia Consortium (EHC) is an international non-profit organisation representing 48 national patients’ organisations for 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 conditions such as haemophilia, von Willebrand Disease (VWD) and other rare bleeding disorders across Europe. However, experts estimate 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 the quality of life of people living with rare bleeding disorders;
- Improving diagnostic and treatment facilities;
- Ensuring the 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.
