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Introducing our new ‘Transition Guide’

Dravet Syndrome UK is delighted to unveil our new ‘Transition Guide’ – now updated with more information and practical advice to empower families with the expert knowledge needed to navigate the transition from child to adult services. 

Becoming an adult is a big change for any child. For those who have complex needs, like our Dravet Syndrome community, it brings extra challenges. The theme of our guide is don’t be scared, be prepared’ – from information about the legal, healthcare, social care and financial changes involved in transition to the impact on family life, it provides facts, advice and practical tips to support families through every aspect of the transition journey.

Galia Wilson, Chair of Trustees at Dravet Syndrome UK says: “As a parent/carer to someone living with Dravet Syndrome, the transition to adulthood can feel very daunting. There’s a lot of information out there and you may hear some negative stories. The reality is that there are ups and downs involved in the transition process.”

"With this guide, we’re here to hold your hand throughout the journey and to help you through those ups and downs. We’ll empower you with knowledge and advice to help you plan for your child’s future in a positive and managed way. You’ll know your rights and understand the options ahead. And if you can’t find the exact information you’re looking for, you should find links to other organisations and services with the specialist knowledge to support your needs.”

Galia Wilson, Chair of Trustees at Dravet Syndrome UK

All families registered with DSUK with a young person aged 13-25 living with Dravet Syndrome will receive a hard copy of the Transition Guide in the post. If you would like to order a copy please email us on [email protected]. A digital version of our Transition Guide is available here: https://www.dravet.org.uk/library/transition-guide/.

Dravet Syndrome UK would like to thank all those who helped us develop this guide – our funders, expert reviewers and parents who shared their experiences and contributed photos. We’d also like to thank Adept Design and Alex Freeman for the photography and artwork.

Dravet Syndrome UK’s Transition Guide is supported by unrestricted educational grants from Jazz Pharmaceuticals, Stoke Therapeutics, UCB and Jeans for Genes. These organisations have had no involvement in the development of the guide, or any of its content.