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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.

What we do
Support for families Info for professionals

Join the Every Day in May for Dravet challenge

Sign up for FREE to this year's 'Every Day in May for Dravet' challenge and run, swim, cycle or walk 2km or 5km every day throughout the month. Get fit, have fun and raise vital funds for Dravet Syndrome UK!
Sign up now!

How can we help you

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.
All journeys

George

George had his first seizure at around seven months old. Mum, Susan, shares their story.

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.
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Financial Support

Find out about the grants, assistance fund and awards that we provide for families.

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.
Impact of donations
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.

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 here
The 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