New study to measure daily life impact of rare bleeding disorder in youth

This study looks at how hereditary hemorrhagic telangiectasia (HHT) affects the quality of life of children and young adults aged 2 to 25. Participants will fill out questionnaires about their physical, emotional, and social well-being. Researchers will also review medical records to see how severe the disease is and how often patients need medical care. The goal is to better understand the real-world impact of HHT on young patients.