The EHC is formally engaged in European health policymaking and works closely with key partners and coalitions.
The EHC is a member of the European Organisation for Rare Diseases (Eurordis), the European Patients’ Forum (EPF) and is a founding member of the Platform of Plasma-Users (PLUS), which represents a group of patients relying solely or partially on plasma-derived therapies. The group actively advocates for safe access to these therapies.
The EHC is also a member of the European Commission Expert Group on Rare Diseases (CERD), works closely with Members of the European Parliament (MEPs) through an informal support group and is accredited to participate in the activities of the European Medicines Agency (EMA) as well as being represented on the EMA’s Paediatric Committee.
Finally, the EHC maintains close ties with the European Directorate for the Quality of Medicines and Healthcare (EDQM), an organisation part of the Council of Europe.
Policy engagement and advocacy
The EHC actively monitors European health policies and legislative developments with a direct impact on access to treatment and care for the congenital bleeding disorders community in Europe, and keeps its membership informed through quarterly analytical reports.
The EHC carries out European and national advocacy campaigns in function of its members’ needs. In recent years the EHC has carried out targeted advocacy campaigns in areas such as:
- Health technology assessments
- Paediatric investigation plans
- Orphan medicinal regulations
- Blood safety
- Patient involvement in decision-making
- Minimum factor consumption
The EHC organises three yearly Round Tables of Stakeholders in Brussels. These events aim to build a bridge between European health policy-making and key issues in access to treatment and care for people with haemophilia and congenital bleeding disorders in Europe. The Round Tables bring together representatives from the patient, medical and scientific communities as well as policy-makers, regulators, payers, industry and other stakeholders to discuss arising issues and their potential solutions. Most of the Round Tables take place in the European Parliament in Brussels and are hosted by Members of the European Parliament (MEPs); this ensures that the issues receive broad coverage and remain on policy-makers’ agendas.
For more information on past and future Round Tables, please consult the events section.
World Haemophilia Day
Each year on April 17th, the EHC together with its members and the global bleeding disorders community observe and celebrate World Haemophilia Day. This day commemorates the birthday of Frank Schnabel, founder of the World Federation of Hemophilia (WFH), and serves as a platform to raise awareness about key aspects of haemophilia and congenital bleeding disorders globally and in Europe.
To find out more about past and future World Haemophilia Day actions, please consult our calendar.