About Bleeding Disorders

What is Haemophilia?

Haemophilia is an inherited lifelong bleeding disorder that prevents blood from clotting properly. It is primarily genetic and almost exclusively affects males. People with haemophilia do not have enough clotting factor, a protein in the blood that controls bleeding. The severity of a person's haemophilia depends on the amount of clotting factor that is lacking. There are three levels of haemophilia -mild, moderate and severe-. Haemophilia shows different types, the most common being haemophilia A, cause by a deficiency of factor VIII, and haemophilia B, which is caused by a deficiency of factor IX.

The Haemophilia in the EU

Worldwide, the percentage of the population affected with haemophilia is estimated at 1 per 10,0002 , which, under EU guidance, classifies it as a rare disease (defined as less than 5 per 10,000). Through its Public Health and Research Programmes, the EU has identified rare diseases as an EU health policy priority because, with such low number of patients, it has been agreed by Member States that special efforts, combined and cross-national, are needed to address them. The most accurate figures on the number of haemophilia patients in the EU can be drawn.

The Need for a Data collection system

Whilst accurate and systematic data collectionsystems do exist in some EU Member States, the figures can only represent a best estimate, as consistent national surveillance systems do not exist across the EU.

Therefore, the survey relies on voluntary and self-reporting by national haemophilia patient organisations. It is also believed that a significant number of people with haemophilia remain undiagnosed due to lack of disease awareness. Having a systematic data collection system across the EU would allow clinicians to compare best practice methods (including the use of preventive treatment), monitor and identify safety issues as well as share information related to diagnosis rate improvements. Such information would provide valuable treatment, safety and care information to the benefit of patients, physicians and health care providers across the EU.