Advocacy
The EHC is formally engaged in European health policy-making and works closely with key partners and coalitions.
What does advocacy mean to us?
The EHC is a member of and partners with a number of European and international organisations, works closely with Members of the European Parliament (MEPs) and the European Commission, is accredited to participate in the activities of the European Medicines Agency (EMA) as well as being represented on its Committee for Orphan Medicinal Products (COMP). The EHC is currently also represented at the ERN-EuroBloodNet, HTA Stakeholder Network, and Critical Medicines Alliance.
Finally, the EHC maintains close ties with the European Directorate for the Quality of Medicines and Healthcare (EDQM), an organisation which is part of the Council of Europe.
Our advocacy activities
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 analytical reports.
Access the latest legislative updates and the periodic Public Policy Review on the EHC Academy here.
Depending on the needs of its NMOs, the EHC may send a delegation to the field to support efforts to provide better care for people with bleeding disorders. The EHC may also carry out European and national advocacy campaigns according to its members’ needs.
EHC Position Papers
The EHC is regularly involved in the issuing or endorsement of position papers to advocate for a better quality of life for patients with bleeding disorders in Europe.
EHC Round Tables
The EHC organises 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 EHC 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.
Our awareness campaigns
During the course of the year, the EHC organises many campaigns to raise awareness of the bleeding disorders community’s struggles and needs, and engages regularly with international campaigns launched by other stakeholders.
EHC Think Tank
The EHC Think Tank provides a platform for health systems change tackling complex issues by broad collaboration to ultimately improve patients’ quality of life.
In 2021, the EHC launched the Think Tank with the goal of identifying key areas that could significantly improve the healthcare ecosystem through multi-stakeholder collaboration. Over the following three years, the EHC Think Tank made remarkable progress in shaping the future of healthcare in Europe in five thematic areas, called “workstreams”: Registries, Patient Agency, Access Equity, Future Care Pathways, and Hub & Spoke Model.
At the end of 2024, the EHC Think Tank entered into a new phase, shifting towards leveraging the invaluable learnings and outcomes that emerged from its numerous workstreams. As of 2025, while the EHC Think Tank technically ceases to exist in its original form, the EHC advocacy efforts will prioritise the implementation of these findings, actively engaging with decision-makers at the European Union and Council of Europe institutions, as well as national levels through EHC NMOs.
Partners
Stay up-to-date with the latest EHC activities and events!