Patients’ needs assessed
In September 2009 a multidisciplinary, multicultural group of experts met in Montréal to explore the unmet psychosocial needs of people with haemophilia. A detailed meeting report can be downloaded here (PDF).
The meeting identified an number of key areas; education and awareness beyond the patient and the specialist healthcare team, the importance of access to physical therapy and self-management.
It became obvious that more research is needed about psychosocial issues in haemophilia.
In order to ensure a multi-stakeholder approach for the survey an International Advisory Board was nominated. The board, which consists of well known and acknowledged specialists from the haemophilia community, have exclusively driven the development of the HERO study
You can download the list of the IAB members here (PDF).