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Families invited to shape Dravet Syndrome UK’s research priorities

At our biennial conference on 15th November 2025, our Chief Scientific Officer, Ceri, shared the first step in developing our research strategy: Dravet Syndrome UK’s Priority Setting Project. The aim of this project is to ensure that Dravet Syndrome UK funds research that puts the needs of the families living with Dravet Syndrome at its heart.

There are many unanswered questions about Dravet Syndrome, so we are asking families to share the unanswered questions that matter most to them; we want to hear families’ questions, in their own words, about these areas:

  • Challenges beyond seizures
  • Life as an adult with Dravet Syndrome
  • Impact on the whole family

We will focus our resources on these under-researched areas to address the many challenges families face, and ensure that research is impactful for as many families as possible.

Share the questions that matter most to your family

Contribute to this project

After this initial stage, the questions shared by families will be categorised to find underlying themes. These themes will be reshared with the community, who will be asked to prioritise them. The top priorities will directly inform Dravet Syndrome UK’s decisions about which research projects to fund, and will be outlined in our research strategy, expected to be shared in summer 2026.

Want to share more?

Over the next few months, Dravet Syndrome UK will also be running small group discussions to explore research priorities in more detail. If you’re interested in taking part, please register here or contact us at [email protected]