The European Haemophilia Consortium (EHC) is a non-profit, patient-led organisation representing people with haemophilia and other inherited bleeding disorders across Europe. Founded in 1989, the EHC brings together national member organisations from more than 40 countries to advance high-quality care, strengthen patient advocacy, and promote equitable access to treatment for all individuals living with bleeding disorders.
Working at both European and national levels, the EHC engages with policymakers, healthcare professionals, regulators, and patient communities to improve standards of care and influence health policy. Its work spans a wide range of areas, including health technology assessment, economics, data collection, emerging therapies, and the development of evidence-based treatment guidelines.
A major focus of the EHC is reducing disparities in diagnosis, treatment availability, and clinical outcomes between different European countries. Through training, research, collaborative networks, and specialised committees, the organisation supports national member organisations in building their capacity, strengthening advocacy efforts, and navigating their healthcare systems more effectively.
The Irish Haemophilia Society (IHS) has long played an active and influential role within the EHC, including:
- Health Technology Assessments and Economics
- EU health policy and regulatory discussions
- Surveys, research, and data initiatives
Members of the IHS also participate in EHC Steering Group Committees, helping shape policy and strategy at a European level, which in turn contributes to broader European efforts to advance treatment access, promote patient safety, and support the bleeding disorders community.
EHCucate App
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.