Our News

Today, we're excited to be launching Dravet Syndrome UK’s first 5-year Research Strategy 2027–2032, setting out our vision and priorities for research over the years ahead

This article explains the different types of disease‑modifying therapy for SCN1A-related Dravet Syndrome, where they currently stand in development, and what this landscape means for families living with the condition today.

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.

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.