Thomas
Thomas, now aged 18, had his first seizure at 10 weeks old. Parents, Scott and Sarah, share their family’s experience.
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.
Awesome Abseil
Join Dravet Syndrome UK and conquer your fears by taking on a 100m descent of the Spinnaker Tower, Portsmouth on Saturday 5th September.
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We support families, raise awareness and fund research. There’s a wealth of information on this website. So to help you find what you are looking for more quickly, choose an option from the menu below.
Dravet journeys
Read real life stories about living with Dravet Syndrome shared by our amazing community of families.
Amelia
Amelia had her first seizures at just two months old. Mum, Jamie, 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.
"What stands out most is his happiness. Mo manages to make me smile every single day. Despite everything he faces, he is one of the happiest children I have ever known."
Become a Friend of Dravet Syndrome UK
Join us in making a lasting impact. Your regular gift can turn uncertainty into dependable support that enables us to reach families when they need us most, so that when families living with Dravet Syndrome wake to another difficult day, help is already at hand.
Set up your regular donation hereDravet Syndrome UK is a charity that genuinely cares, is always available and is an absolute blessing to have in our lives.Gary, Dad to Lottie 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