Dravet Syndrome UK launches new Lived Experience Board

Dravet Syndrome UK is proud to announce the launch of a new Lived Experience Board to centre the expertise of families in decision-making.

Families living with Dravet Syndrome hold unique, expert knowledge gained through daily experience of complex care needs, navigating health systems, managing risk, and supporting quality of life. The Lived Experience Board invites family members and carers of people living with Dravet Syndrome to use this experience to share their feedback on Dravet Syndrome UK’s activities and scientific research.

Research and support services are more relevant, more accessible and more impactful when the people they are designed for have a genuine say in shaping them. The Lived Experience Board gives families a direct route to do exactly that, whether that means telling a researcher what questions really matter to families, reviewing a study plan before it goes live, or helping Dravet Syndrome UK decide where to focus its efforts next.

If you’re a parent, carer, sibling or family member of someone living with Dravet Syndrome, this is an opportunity to use your experience to make a difference for your family and the wider community. You don’t need any particular background or training; your lived experience is the expertise.