Ben
Ben received his Dravet Syndrome diagnosis as an adult, despite having had his first seizures, 3 febrile convulsions, at 5 months old. Thank you to his Mum, Liz, who tells 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.
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.
Book now for our family weekend
Registrations are now open for our annual family weekend away, taking place from Friday 13th - Monday 16th June at Center Parcs Sherwood Forest. You can also apply for a £400 grant to attend too!
Find out how to book Dravet journeys
Read real life stories about living with Dravet Syndrome shared by our amazing community of families.
Durga
Durga had her first seizure at 4 months old. It lasted for over an hour. Mum Radhika 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.
Thomas is kind, loving and gives the best hugs! He leaves an impression with everyone that he meets. We are extremely lucky to have him and we’re so proud of him.
New study reveals severe lack of support for Dravet Syndrome carers
The results of a UK wide study have been published exploring the impact on caregivers of those living with Dravet Syndrome
Find out 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