Since the formation of the charity, our core focus has been on providing support families with children and more recently offering our 16+ Assistance Fund for those adults who have reached adulthood.
However one thing that has become apparent through improved diagnosis and treatment of Dravet syndrome is the lack of support and advice that is available as these individuals transition into adult services.
As many of the families that we support will know, the transition process from child to adult for someone living with Dravet syndrome can be a very stressful, confusing and worrying time. Transition planning is key but many are unaware of the difficulties and obstacles they may face.
In response, we are delighted to announce the launch of our ‘Transition Guide’ at our recent conference in Liverpool designed to help, support and inform families. We hope this guide will help better prepare families facing this challenging time.