The European Union
For rare conditions, such as bleeding disorders, it is often important to work internationally. Although healthcare is controlled by the member states the EU plays an important role in benchmarking Haemophilia Services and in the licensing of blood products and medicines.
We work with the European Haemophilia Consortium (EHC) to engage with European issue and keep up to date with the best practice from across the continent.
We are currently working with the EHC to campaign for open access to European Markets for the new, longer acting, clotting factor products.
Since 2012 the European Haemophilia Network (EUHANET) has had an accreditation scheme for the designation of European Haemophilia Comprehensive Care Centres (EHCCC) or European Haemophilia Treatment Centres (EHTC). You can find out which Haemophilia Centres have been through the process on their website.
There are two key documents on the standards of treatment and care in Europe. The European Principles of Haemophilia Care and recommendations for optimal use of clotting factors from the European Directorate for the Quality of Medicines and Healthcare.
The European Haemophilia Network is also working to monitor the safety of treatments for people with congenital bleeding disorders in Europe Its European Haemophilia Safety Surveillance (EUHASS) system produces quarterly reports on adverse events in Europe.