Orion
Orion is five years old and lives with Dravet Syndrome. Thank you to his Mum Reniece who shares his 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.
Introducing our new 'Love is...' campaign
Our ‘Love is...’ campaign is based around a powerful film telling the story of five-year old Etta - a brave young girl whose life has been shaped by Dravet Syndrome. The film offers an intimate view into the daily challenges faced by Etta and her parents Lucie and Jo and the vital support Dravet Syndrome UK provides.
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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.
Etta
Etta is five years old and lives with Dravet Syndrome. Her parents Jo and Lucie describe their journey from Etta's first seizure to today.
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.
Curtis is a beautiful little soul. For someone that goes through so much he is so placid and even on the hard days he always manages to say or do something that makes us smile.
New 'Love is...' campaign features a moving film about five year old Etta, who lives with Dravet Syndrome
The film offers an intimate view into the daily challenges faced by Etta and her parents Lucie and Jo and the vital support Dravet Syndrome UK provides.
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