Get Involved in Research
If you’re a family living with Dravet Syndrome, find out how you can get involved in research here.
By taking part in research, you’ll help to improve understanding of Dravet Syndrome and find more therapies to benefit everyone affected by the condition.
Taking part can be anything from talking about your experience in a focus group, answering survey questions about living with Dravet Syndrome, or trialling new devices.
Lived Experience Board
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. This board exists to centre that expertise in decision-making and research.
Patient & Public Involvement & Engagement in research
To further support researchers in working effectively with our community, we have developed a PPIE Guide outlining best practice for PPIE with people living with Dravet Syndrome and how to access input from our Lived Experience Board.