About Us

Dravet Syndrome UK was created in 2009 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.


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.