The European Haemophilia Consortium (EHC) has launched a survey to define the needs of people living with bleeding disorders and inhibitors in Europe with a view to establish a European Inhibitor Network (EIN).
Inhibitor development remains one of the main challenges in the treatment of haemophilia and other bleeding disorders as its causes are not yet understood and the treatment of this complication remains difficult and highly expensive. Inhibitor development has devasting consequences on those affected as it leaves them more vulnerable to bleeds in their joints and this often results in disabilities. Inhibitors can also have debilitating consequences on the individual’s social life and leaves the affected individuals at greater risk of social isolation.
The EHC wishes to develop a European Network to support people living with inhibitors and their families, to combat isolation and to disseminate the latest scientific information about inhibitor treatment and care. For this purpose the EHC has launched a survey in several languages aimed to be completed by the patients themselves as well as their familities and caretakers to help steer the direction of the work carried out by the EHC. The results of the survey will shape the work of the EIN and it is therefore important that the survey is completed by the largest number of patients so that it reflects accurately the needs of those living with inhibitors.
To take the survey, please follow the link belows: