Our News

Dravet Syndrome UK is delighted to announce the appointment of leading paediatric neurologist Dr Elaine Hughes to their Board of Trustees.

Every Day in May For Dravet, now it's 6th year, is open for registration! The challenge is to walk, run, swim or cycle 5km or 2km each and every day in the month of May and raise vital funds for Dravet Syndrome UK!

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.

Tamara ‘Tats’ Ward set a new world record today (Sunday 12 October) at the Royal Parks Half Marathon in a truly unique way - by running the full 13.1 miles in 2 hours and 29 minutes while hula hooping and raising funds for Dravet Syndrome UK.

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