Robbie
Robbie, now aged 41, had his first seizure at five months old. He lives with his Mum, Fiona and Dad, Graham in Fife. Fiona shares their story.
Dedicated to improving the lives of those affected by Dravet Syndrome
Our mission is to bring hope to families living with Dravet Syndrome through support, education and medical research.
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Rank the themes identified in Dravet Syndrome UK's research priority setting. The ranking process will only be open for June. Any family living with Dravet Syndrome in the UK can take part.
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Dravet journeys
Read real life stories about living with Dravet Syndrome shared by our amazing community of families.
Mo
Mo, aged 12, had his first seizure at 6 months old. Dad, Adam, shares their story.
Supporting you every step
Whether you’re a newly diagnosed family or have been caring for a child or an adult living with Dravet Syndrome for many years, you’ll find information, advice, practical tips and insights to help you on every step of your journey.
What is Dravet Syndrome?
An introduction to Dravet Syndrome including causes, symptoms and how to get diagnosed.
Emotional & Practical Support
We provide emotional and practical support to families so we are always there when you need us.
Financial Support
Find out about the grants, assistance fund and awards that we provide for families.
Transition to Adulthood
We help you prepare for transitioning to adult services when your loved one turns 16.
Your support makes a difference
Dravet Syndrome UK relies on the generous support of our community, corporate partners and donations from grant making trusts to ensure we can continue to support families, educate professionals and fund research.
The constant daily medications, never-ending hospital appointments, reduced appetite and lengthy seizures are tough on Lottie, there is no doubt about that. But, through it all, she is an absolute ray of sunshine.
June is Dravet Syndrome Awareness Month
Dravet Syndrome Awareness Month is our annual opportunity to shout loudly about the need for more awareness, support and treatment for everyone affected by this devastating condition, building up to International Dravet Syndrome Awareness Day on 23rd June.
Find out how you can get involved hereThe support, love and sense of community through Dravet Syndrome UK is incredible. Always just a call away when we need it most.Joanne, Mum to Penney who lives with Dravet Syndrome
90
%
of caregivers were unable to continue working due to the sense of ‘constant struggle’ and impact on their mental well-being and quality of life.
European Journal of Paediatric Neurology, November 2023