Dravet Syndrome UK launches first 5-year research strategy

Today, we’re excited to be launching Dravet Syndrome UK’s first 5-year Research Strategy 2027–2032, setting 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. 

You can read the full research strategy here.

As part of our new five-year research strategy, we’re delighted to announce our new research priorities. The six priorities have been intrinsically shaped by the Dravet Syndrome community. Over the past 12 months, we have gathered the thoughts of over 120 caregivers, through our Priority Setting exercise and workshops. From sharing the questions that matter most, to ranking the 12 research themes, your voices and experiences have been at the heart of this process.

The priorities are:

1. Behaviours that challenge, mental health and emotional wellbeing
2. Coordinating care across the system
3. Impact on parents, siblings and the wider family
4. Home, care and planning ahead
5. Thinking, learning and communication
6. Movement, balance and physical ability

You have helped us understand where research needs to focus, what matters most to families and where further answers are needed, ultimately enabling us to identify and set out these priority research themes for the next five years. Your contribution really will make a difference to what comes next.

As we recognise that evidence on Dravet Syndrome in adulthood is currently more limited, we will ensure each priority area has at least one adult-specific sub-theme in each grant round.

We know how much it means when families fundraise for Dravet Syndrome UK. Being guided by our community in setting out these priorities means that when your generous donations are used to help us fund new research, we are confident that the research will meet the needs of the families that we support. 

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.