George
George had his first seizure at around seven months old. Mum, Susan, shares their story.
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Dravet journeys
Read real life stories about living with Dravet Syndrome shared by our amazing community of families.
Poppy
Poppy has recently become an adult and has therefore transitioned into adult services. Mum, Vicki, shares more.
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.
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Transition to Adulthood
We help you prepare for transitioning to adult services when your loved one turns 16.
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In Landon’s three short years he has had to endure more than I can comprehend. He is the cuddliest boy in the world. He wants to be next to you, hold your hand, show you things, take you places, sit you down and be with you.
“Life-changing” drug to treat Dravet Syndrome shows promising results in initial trials
A new experimental treatment for children living with Dravet Syndrome is safe and can reduce seizures considerably according to findings of an international clinical trial.
Read moreThe 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