Our News
Dravet Syndrome Awareness Month 2025: shining a light on little moments that matter
Today marks the start of Dravet Syndrome Awareness Month 2025, an annual campaign dedicated to raising the profile of Dravet Syndrome.
Dravet Syndrome UK announces new Chief Scientific Officer
Dravet Syndrome UK is delighted to announce that Ceri Hughes, is joining the charity as its first ever Chief Scientific Officer (CSO).
KSI thanks young fundraiser Mimi Ward on The One Show
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 announces new Head of Family Services
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 signs open letter to the Government calling for urgent investment into neurological research
Dravet Syndrome UK is proud to be joined with the Neurological Alliance to raise awareness and call on the UK Government to #InvestInNeuroResearch.
Introducing our new ‘Transition Guide’
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.
New study reveals severe lack of support for Dravet Syndrome carers
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’.