Our Research Strategy

Dravet Syndrome UK’s five-year strategy for 2021-2026 sets out our aim to deliver ongoing and new research that puts the needs of the families living with Dravet Syndrome at its heart. In 2026, Dravet Syndrome UK will share a detailed research strategy outlining our research priorities, review process, and funding structure.

There are many challenges faced by families living with Dravet Syndrome that haven’t been researched enough. Dravet Syndrome UK has and will fund studies addressing these gaps. It’s why we prioritise research into:

• Understanding, treating and improving care for the non-seizure related aspects of Dravet Syndrome (known as ‘comorbidities’), including intellectual disability, autism, ADHD, behaviours that challenge and difficulties with speech, mobility, eating and sleep.
• Treatment and care for adults (aged 16+) with Dravet Syndrome, from transition through to later life.
• Understanding the impact of Dravet Syndrome on the whole family.

As part of our priority setting project, Dravet Syndrome UK is currently asking families living with Dravet Syndrome to share the unanswered questions that matter most to them in these areas, so that we can fund research that will make a difference.

Our aim is to bridge the gap between families affected by Dravet Syndrome and researchers. We make sure research meets the needs of families living with the condition and that their voices and priorities are heard as studies are developed. 

Dravet Syndrome UK are introductory members of The AMRC.