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About bleeding disorders

‘Bleeding disorders’ is a generic name for a group of disorders that affect the ability of blood to clot in an individual. Bleeding disorders include conditions such as haemophilia A and haemophilia B, von Willebrand Disease (VWD) and rare bleeding disorders (RBDs). These conditions present themselves in either severe, moderate or mild form.

When they have access to adequate treatment, people with bleeding disorders can lead normal and fruitful lives. However, poor access to treatment can have drastic consequences on the lives of those affected by these conditions. In fact, bleeds that are not properly managed can be crippling and even life-threatening when they occur, for example, in the brain.

All bleeding disorders fit the description of rare diseases as provided by the European Union, which is a condition that affects less than 5 people in 10,000. Despite being rare diseases, conditions such as haemophilia and von Willebrand Disease (the most frequent bleeding disorders) are actually ahead of the curve compared to many other rare diseases, in the sense that both diagnostics and a variety of treatments exist for these conditions. The challenges faced by these patients relate to a lack of access to adequate treatment (which is often expensive) and specialised healthcare services (which may be located only in one or two cities in a given country).

Please consult the EHC website for more detailed information.

Organisations

Patients within the European region face significant disparities in access to treatment and, as a result, have different quality of life. The European Haemophilia Consortium (EHC) strives both at the European and national levels to increase the awareness of the daily realities of people with bleeding disorders.

Read more on the work of the EHC here.

The EHC supports its members at national levels when needed and, in function of the issues, 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.