Our Research Strategy

Dravet Syndrome UK’s five-year strategy for 2027-2032 sets out our vision and priorities for research over the years ahead. Sharing this research strategy is a major milestone in our plan to fund research that addresses the unmet needs of people affected by Dravet Syndrome.

The strategy identifies six priority areas for research, focusing on some of the biggest unanswered questions and unmet needs for families. From thinking, learning and communication to mental health, movement, family life and planning for the future, we want to help drive research towards better outcomes at every stage of life. In 2026, we gathered the thoughts of over 120 caregivers, through our Priority Setting exercise and workshops and these six priorities have been intrinsically shaped by the Dravet Syndrome community for the Dravet Syndrome community.

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.

Alongside this, our research strategy sets out our aims to strengthen the Dravet Syndrome research community in the UK, and improve knowledge to allow for better understanding, management and outcomes for people living with the condition.

The strategy also sets out our funding approach, scope, inclusion policies, stance on collaboration and how we will measure the impact of our work.

We know there is still so much to understand about Dravet Syndrome, particularly as people get older and move into adulthood. Our strategy aims to address these gaps, support high-quality research and help turn greater understanding into meaningful change.

Our aim is to bridge the gap between families affected by Dravet Syndrome and researchers. We make sure research we support 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.  We support the principle of using animals in research when it is necessary to advance understanding of health and disease and to develop new treatments. This research only takes place where there is no alternative available. All AMRC member charities support this principle, as outlined in this statement: AMRC statement on the use of animals in research