Having an Inhibitors means that conventional treatments for bleeding disorders don’t work properly. Many of our members with an inhibitor suffer from a much higher number of bleeds with all the pain, joint damage, and inconvenience which goes with that. Inhibitors are one of the most important challenges in the treatment of Haemophilia today.
One of the barriers to improving treatment and care for people with inhibitors is the comparatively low numbers of people with an active inhibitor at any given time. Most countries aren’t large enough provide high quality support or to conduct the research that is needed on their own.
That is why we are particularly pleased that the European Haemophilia Consortium (EHC) has been expanding its work on inhibitors recently. They recently added Ms Kristine Jansone to their team as Inhibitor Progamme Officer and are currently working on developing a European Inhibitor Network. The new Network will bring together people with bleeding disorders who have developed an inhibitor as well as their families and carers.
To make sure that the Network is working on the issues that matter most they need your help. They are conducting a survey across Europe to find out more about the day to day needs and challenges of living with an inhibitor.
The survey will be open for a while but if you can try and complete it before 25 September it would be greatly appreciate.