The EHC aims to ensure that its NMO\’s 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
EHC contact points
The EHC works hard to maintain contacts with all of its NMO\’s throughout the year to monitor significant developments in access to treatment and care in their countries. Each EHC Steering Committee member acts as a contact point for a group of NMOs to ensure maximum communication flow and on-going exchange.
The EHC collects data from its members annually on a particular aspect of patients’ access to treatment and care in Europe and publishes the results widely, including in peer-reviewed scientific journals, EHC monographs and other communication tools for use by its members and other stakeholders at national and European levels.
The EHC has collected and published data on:
- Tenders and Procurement of Coagulation Factors Concentrates (in production)
- Funding of Haemophilia Societies and Associations (in production)
- Haemophilia care in Europe (conducted every three years)
The EHC provides targeted and in-depth training to its NMO\’s based on their changing organisational needs, economic climates and political environments. Currently, the EHC is running three series of multi-annual workshops on:
- Economics and Health Technology Assessments
- Youth Leadership
- New Technologies
The EHC also provides training through parallel workshops held during its Annual Conferences. These have included, amongst others:
- Treatment compliance strategies
- How to choose treatment products for your country
- Communication between doctors and patients
- Family dynamics and siblings
- Challenges in mild and moderate haemophilia
- Youth-led strategies for engagement
- Haemophilia Treatment Centres and NMO\’s working together
- Financing of Haemophilia Societies
In 2015, the EHC commenced an annual EHC Leadership Conference to bring multiple generations of patients’ leaders and staff members together for an annual exchange of experiences, best practices and shared positions on common issues and challenges facing the European community.
The EHC disseminates to its NMO\’s and other stakeholders the latest scientific and medical developments in the field of congenital bleeding disorders through several fora, including its Annual Conferences, New Technologies workshops and series of Round Tables of Stakeholders in Brussels as well as through its three newsletters per year.
The EHC Conference takes places every year during the first weekend of October. To consult the programmes of past and future EHC conferences please follow this link.
The New Technologies workshop takes place annually in November. Attended by patients, healthcare providers, payers, regulators and other key stakeholders, it examines the technologies behind new and upcoming treatment products and also discusses strategies for patients’ access.
The EHC organises three Round Tables of Stakeholders in Brussels each year, which bring together patients, healthcare providers, payers, policy-makers, industry and other stakeholders to discuss key European health policy developments. Traditionally one of the three Round Tables is scientifically oriented while the other two are held in the European Parliament and examine policy-oriented issues. To consult a list of past Round Tables please follow this link.
Support at national level
The EHC supports its members at national levels and works closely together with other stakeholders including the World Federation of Hemophilia (WFH) and the European Association for Haemophilia and Allied Disorders (EAHAD) to ensure maximum impact.