Orion
Orion is five years old and has 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.
Attend the Dravet Syndrome UK conference
Hear from leading experts in Dravet Syndrome and learn more about the latest guidance and research. The professionals day takes place on Friday 14 November and parent/carer day on Saturday 15 November.
Book 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.
Beth
Beth had her first seizure when she was just seven weeks old. Her Mum Jen shares Beth's story and how Dravet Syndrome has affected their family
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 awards launched to celebrate unsung heroes
Dravet Syndrome UK has launched the Little Moments Matter Awards, a new initiative to recognise and celebrate outstanding health, social care, and education professionals who provide vital support to families affected by 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