Advocacy • European Haemophilia Consortium (EHC)

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.

See our events

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.

World Haemophilia Day

Each year, on 17 April, the EHC joins the global bleeding disorders community to commemorate World Haemophilia Day.

Rare Diseases Day

Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse – but united in purpose.

European von Willebrand Disease (VWD) Awareness Day

In 2023 the European VWD Community marked its first Awareness Day, with the ambition to increase and improve diagnosis and treatment options at the European and national levels.

#ThisWay Campaign

The EHC #ThisWay Campaign aims to promote physical and mental wellbeing through a range of initiatives, such as sharing patient stories, facilitating physical activity challenges, and hosting walking tours at the EHC conferences.

Partners

Stay up-to-date with the latest EHC activities and events!