
Orion
Orion is five years old and has Dravet Syndrome. Thank you to his Mum Reniece who shares his story
Our mission is to bring hope to families living with Dravet Syndrome through support, education and medical research.
An introduction to Dravet Syndrome including causes, symptoms and how to get diagnosed.
We provide emotional and practical support to families so we are always there when you need us.
Find out about the grants, assistance fund and awards that we provide for families.
We help you prepare for transitioning to adult services when your loved one turns 16.
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.
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
European Journal of Paediatric Neurology, November 2023