Our News

We break down the changes and let you know what this means for you and your family, as well as some key questions to ask professionals.

A look back on Dravet Syndrome Awareness Month, June 2026.

Understanding the reality of life with Dravet Syndrome is essential to ensuring our work reflects what matters most to the families we support. Here, we share the findings from our recent Family Survey.

Understanding the reality of life with Dravet Syndrome is essential to ensuring our work reflects what matters most to the families we support. Here, we share the findings from our recent Family Survey.

Dravet Syndrome UK joins new research collaboration to help find early disease clues to help patients with severe epilepsies.

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

A new experimental treatment for children living with Dravet Syndrome is safe and can reduce seizures considerably according to the findings of a University College London and Great Ormond Street Hospital-led international clinical trial led by Professor Helen Cross.

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.