Dravet Syndrome UK support families by providing support via a private forum, an annual weekend away, a biennial conference and through provision of life-saving monitors. We also organise fundraising and funnel funding into the latest research with the assistance of our medical advisory board.
Current research indicates that Dravet syndrome affects 1:19,000 people. As a catastrophic form of epilepsy we are dedicated to helping the UK Dravet community who desperately need support and help to avoid isolation, cope with living with the condition, financial support and to help guide them with medical advice as well as raising awareness more generally.
Dravet Syndrome UK works with our community of families and supporters from our database to generate fundraising to achieve our core objectives of raising awareness, supporting families and funding research. This includes a landmark fundraising event (Ben Nevis climb in 2017) along with our two day biennial conference. For families we also provide lifesaving monitor grants, a 16+ grant and provide grant funding for an annual weekend away to share time and experiences with other Dravet families. We also fund approx. £50,000 of Dravet research each year.
