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.

We now support more than 2,000 parents, carers and siblings across nearly 600 registered families, and over 500 healthcare professionals who turn to us for guidance, expertise and resources. Beyond that, over 20,000 individuals visited our website in 2025 – many are likely to be family members and carers from the estimated 1500 further families living with Dravet Syndrome in the UK, as well as healthcare and education professionals with an interest in the condition, who rely on our information without formally registering with us.

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.

We created this special film for Dravet Syndrome Awareness Day last year to highlight the incredibly difficult and life-limiting impacts of Dravet Syndrome, as well as highlighting the beautiful moments and joy children and young adults living with Dravet Syndrome bring to their families.