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Our Community Focus Areas

EHC represents approximately 120,000 people diagnosed with rare bleeding conditions such as haemophilia, von Willebrand Disease (VWD), and other rare bleeding disorders across Europe. However, experts estimate that many more live with an undiagnosed rare bleeding disorder.

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Community

EHC Bleeding Disorders Community comprises patients with different rare congenital bleeding disorders from 47 EHC National Member Organisations. At the EHC we prioritise a multidisciplinary approach and focus on the complexity of topics which a person living with a bleeding disorder faces in life: a disease itself, its symptoms, severity, diagnosis, and more, but also such important aspects as youth, ageing, mental and physical health, women and bleeding disorders, etc.

Focus Areas: Disease-based

European Rare & Inhibitor Network

European Rare & Inhibitor Network (ERIN) comprises people affected by extremely rare bleeding disorders, people affected by haemophilia A and B with inhibitors, as well as multidisciplinary care experts.

Haemophilia A

Haemophilia A is a rare congenital bleeding disorder that occurs in people with a limited amount of clotting factor VIII/ 8. The severity of the disease will depend on the level of clotting factors present in the body.

Haemophilia B

Haemophilia B is a rare congenital bleeding disorder that occurs in people with a limited amount of clotting factor IX/ 9. The severity of the disease will depend on the level of clotting factors present in the body.

Von Willebrand Disease (VWD)

Von Willebrand Disease (VWD) is the most common bleeding disorder affecting up to 1% of the general population. Discover the VWD-related projects and materials here.

Focus Areas: Aspect-based

Ageing

Healthy pathway towards ageing – a topic that is equally important for all groups of the bleeding disorders community.

Dental Care

Caring for oral and dental health at every stage of life is essential for people with congenital bleeding disorders. Discover the oral health section to get some advice and useful tips.

Mental Health

Maintaining good mental health is crucial for managing stress, anxiety, uncertainty, and unique challenges faced by those with bleeding disorders, enhancing overall quality of life.

Physical Activity

Engaging in appropriate physical activity helps individuals with bleeding disorders improve joint health, boost energy levels, and reduce the risk of bleeding episodes.

Women and Bleeding Disorders(WBD)

Addressing the specific needs of women with bleeding disorders ensures accurate diagnoses, effective treatments, and tailored support, considering the unique challenges posed by menstruation and pregnancy, among others.

Youth

Young people in the bleeding disorders community play an important role of the future leaders. The EHC encourages their personal growth and positively influence as the EHC Youth Committee drives and implements the EHC Youth Strategy.

Community Insights

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