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.
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 aims to ensure that its NMOs become and / or remain effective patients’ organisations at national and European levels, and provides them with:
- EHC contact points
- Data collection
- Targeted capacity building
- State-of-the-art information
- Support at national level, as needed
For more details on the EHC, events, publications etc. please see the EHC website.
The EHCucate App is an accessible educational app designed to provide people with information on rare bleeding disorders and treatments available. It is a resource repository and educational tool for patients, patient advocates and anybody interested in novel therapies for rare bleeding disorders.
The app allows users to bookmark elements to add to their library, improve their knowledge and test their understanding with quizzes, as well as exploring a variety of in-app media, track progress, and check out suggestions for further exploration on topics of interest.
The app can be found on the App Store and Google Play.