Our News

Get involved this June for Dravet Syndrome Awareness Month and tell us, in your own words, what love means to you and your family while living with Dravet Syndrome.

Dravet Syndrome UK has launched the Lived Experience Board to centre the expertise of families in decision-making.

Join us on Saturday 28th February to spread awareness this Rare Disease Day

A look back on the research advancements made in Dravet Syndrome in 2025, including Dravet Syndrome UK's contributions.

Dravet Syndrome UK attended the American Epilepsy Society meeting in Atlanta in December 2025. Here's what we learned.

Dravet Syndrome UK is asking families to share the unanswered questions that matter most to them, so that we can fund research into areas that will make a difference.

The winners of Dravet Syndrome UK's first-ever Little Moments Matter Awards revealed at the Dravet Syndrome UK conference in London

Today, Dravet Syndrome UK has launched a new ‘Love is’ campaign, which includes a powerful film telling the story of five-year old Etta - a brave young girl whose life has been shaped by Dravet Syndrome. The film offers an intimate view into the daily challenges faced by Etta and her parents Lucie and Jo and the vital support Dravet Syndrome UK provides.

Dravet Syndrome UK attended the International Epilepsy Congress earlier this month in Lisbon. Here's the round up from our Chief Scientific Officer, Ceri Hughes, on the latest news and developments relevant to Dravet Syndrome