DSUK Transition to Adulthood Guide
A guide about moving into adulthood for parents and carers of young people living with Dravet Syndrome.
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.
In February 2025, we launched our updated and revised Transition Guide – a guide about moving into adulthood for parents and carers of young people with Dravet Syndrome.
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.
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.
Click on the images below to find out more.
DSUK 16+ Assistance Fund
A DSUK grant available for families living with one or more adults with Dravet Syndrome, aged 16 and over.
Access Ava
Find out how you can use the Access Ava tool to get free legal advice for you and your family.
16+ Grant & Support Signposting Summary
Whether you’re looking for help with equipment, activities, education, wellbeing or other opportunities, we hope this guide makes it a little easier to discover funding that may be available to you.
Living Options for Young People and Adults
This guide includes information on the four main living options – the family home, supported living, residential care or their own home with carer support.
General Signposting for Parent Carers
Discover places to find help, support and funding, for families living with Dravet Syndrome.
Personal Stories
Every Dravet Journey is unique. Read the stories of adults who are living with Dravet Syndrome here.