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.
Our News
Help us to shape research priorities in Dravet Syndrome
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
Dravet Syndrome UK joins new research collaboration to help find early disease clues to help patients with severe epilepsies.
Love is Dravet Syndrome Awareness Month 2026
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 launches new Lived Experience Board
Dravet Syndrome UK has launched the Lived Experience Board to centre the expertise of families in decision-making.
“Life-changing” drug to treat Dravet Syndrome shows promising results in initial trials
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.
Rare Disease Day 2026
Join us on Saturday 28th February to spread awareness this Rare Disease Day
Dravet Syndrome UK appoints leading paediatric neurologist Dr Elaine Hughes as trustee
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 returns for 2026
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!