Our News

Today marks the start of Dravet Syndrome Awareness Month 2025, an annual campaign dedicated to raising the profile of Dravet Syndrome.

Dravet Syndrome UK is delighted to announce that Ceri Hughes, is joining the charity as its first ever Chief Scientific Officer (CSO).

The famous YouTuber KSI made a special appearance on the BBC's The One Show to thank ten year-old Mimi Ward, the youngest girl ever to complete the London to Paris bike ride and raise almost £20,000 for Dravet Syndrome UK.

Dravet Syndrome UK is delighted to announce that Sandra Awuah, formerly Senior Social Worker at Enfield Children’s Service, is joining the charity as its first ever Head of Family Services.

Dravet Syndrome UK is proud to be joined with the Neurological Alliance to raise awareness and call on the UK Government to #InvestInNeuroResearch.

Dravet Syndrome UK is delighted to unveil our new ‘Transition Guide’ - now updated with more information and practical advice to empower families with the expert knowledge needed to navigate the transition from child to adult services.

A UK wide study exploring the impact on caregivers of those living with Dravet Syndrome has revealed that 90% were unable to continue working due to the sense of ‘constant struggle’.

We're delighted to announce that we have been selected by the Chan Zuckerberg Initiative (CZI) to receive $800,000 (approximately £600,000) over five years to accelerate our research programme.

We’re delighted to announce the appointment of Stephanie Smith to the Board of Trustees for Dravet Syndrome UK (DSUK),