Join us Donate

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

Jeans for Genes Week

This year, Jeans for Genes named Dravet Syndrome UK as one of their ‘Spotlight Charities’ and have worked with us to produce a short film, highlighting the impact of Dravet Syndrome on siblings and the whole family.
Support for siblings

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

Thomas

Thomas, now aged 18, had his first seizure at 10 weeks old. Parents, Scott and Sarah, share their family’s experience.

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.
Get support

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
"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."

Join the 1 in 15K campaign

1 in 15,000 in the UK are born with Dravet Syndrome. Can you help us to be there for everyone living with, and all families impacted by this rare and life-changing condition? If so, we'd love for you to be a part of our new 1 in 15K campaign.

Get involved here
Dravet 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