Dravet Syndrome UK was created in 2008 by a group of parents who came together looking for support, resources and information relating to a rare, little known neurological condition called Dravet Syndrome.
Today, our database has grown to over 500 families across the UK. We are an independent charity and the only UK organisation dedicated to improving the lives of those affected by Dravet Syndrome.
Dravet Syndrome is a complex and devastating condition. Living with a child or adult who has Dravet Syndrome can be a very difficult and potentially isolating experience for families. From a medical perspective, there is an urgent need for more research into the causes and complexities of the condition, in order to identify more effective approaches to diagnosis and treatment.
Our mission is to bring hope to families living with Dravet Syndrome through support, education and medical research.
Find out more about our five-year strategy.
What We Do
Find out about we make a difference for families living with Dravet Syndrome through support, education and medical research.
Meet the Team
Dravet Syndrome UK is run by a small dedicated team. Read about us here.
Medical Advisory Board
We’re extremely proud to be working alongside a world class experts in the related fields of Dravet Syndrome, Epilespy and learning disability.
Funding Medical Research
Funding medical research is central to our mission at DSUK. Find out more here.
Find out about DSUK's commitments to Safeguarding and read our Policy.
DSUK has made a huge difference to people living with Dravet Syndrome. It has raised awareness of Dravet Syndrome, represented people affected by Dravet Syndrome, has been a source of support to which I can refer families, and has raised funds for, and funded, much research into the condition.