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Lived Experience Board

Dravet Syndrome UK’s Lived Experience Board brings together parents, carers, and family members of individuals living with Dravet Syndrome to ensure that their voices directly inform and shape the direction of services, strategic priorities, and research.

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.

About the Lived Experience Board

The lived experience board has two main roles:

  • Advising on family services: Members will meet as a group to provide feedback on past events, hear about upcoming plans and activities, and share ideas on how future events can be made more inclusive, accessible, and supportive for families affected by Dravet Syndrome. 
  • Patient and Public Involvement and Engagement (PPIE) in scientific research: Members work with researchers to improve study design before research begins, and sometimes whilst it is ongoing. This might include meeting with researchers to share their experience of Dravet Syndrome, reviewing study documents to make sure they’re clear and appropriate, or giving feedback on what families need most.

When applying to join the Board there will be opportunity to be involved in both or either of these roles.

The board is for people affected by Dravet Syndrome who are happy to share their views with Dravet Syndrome UK and researchers, and want to help make events and  research more accessible and meaningful. You don’t need any specific expertise; your lived experience is the expertise.

We aim for a minimum of 20 diverse members to ensure inclusivity for everyone in our community and that different perspectives are represented. We particularly want to include:

  • Parents, primary carers, siblings and grandparents of children and adults living with Dravet Syndrome
  • People across all UK regions (England, Scotland, Wales, Northern Ireland)
  • Families from different ethnicities, religions, and backgrounds

When Dravet Syndrome UK is developing or reviewing services, resources, or strategic priorities, or when researchers contact DSUK asking for lived experience input to improve their study design, projects will be shared specifically with the board.

When you join:

  • You’ll be asked to complete a short form to help identify relevant opportunities.
  • You’ll receive a handbook explaining your role (including the specifics for family advisory and PPIE roles).
  • You’ll receive a monthly email with opportunities, and you can choose which to take part in. We’ll always tell you upfront what’s involved before you decide.
  • You’ll be invited to take part in two advisory meetings per year, with the option to contribute to additional consultations if you wish.
  • You will receive feedback on the impact of your contributions.
  • DSUK will track your involvement to prevent over-burdening. We expect typical involvement to be 2 meetings and 3-6 activities per year, with each activity taking 1-2 hours.

In addition to meetings, there may be opportunities to review resources, comment on new initiatives, or share feedback on specific areas of service delivery.

Research participation opportunities are shared via our quarterly newsletter and Get Involved in Research webpage, where you can see all open studies families can participate in.

  • Inform the direction of support and resources offered by Dravet Syndrome UK to help ensure services reflect real family needs and experiences.
  • Stay informed about developments in family support and Dravet Syndrome research.
  • Have a voice in shaping research.
  • Help make Dravet syndrome UK’s events and services, and research as accessible and inclusive as possible.
  • Connect with other families and the research community.

If you would like to join our Lived Experience board, please complete the application form here.