The HERO study has confirmed that haemophilia can negatively impact people’s quality of life in the form of decreased mobility, pain or discomfort, depression and anxiety. In fact, 89% of people with haemophilia report that pain has interfered with their daily life in the last four weeks, and 50% say they experience constant pain. Despite these challenges, few people with haemophilia report receiving counselling. A child’s haemophilia may also impact parents’ well-being. Parents of a son with haemophilia report feelings of guilt, disappointment and a desire to increase society’s understanding of haemophilia.

Only 22 % of people with haemophilia in the hero study say that they have received counselling in the past five years.

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