Join Us
Join our Dravet community to gain access to the comprehensive range of emotional, practical and financial support services we offer.
Welcome to the area of our website that is dedicated to families. Here you can find useful information and get practical support in navigating the day to day challenges of living with Dravet Syndrome.
At DSUK, we’re here to guide you through these challenges, provide support and reassure you that you and your family are not alone. Our Dravet Syndrome Community is here to support you every step of the way. Click on the images below for detailed guidance and advice.
Family Guide
A comprehensive resource for families – it’s the culmination of knowledge, lived experience and insights informed by our Medical Advisory Board.
Apply for Grants
Find out detailed information about the various grants, assistance fund and awards that we provide for families. Apply today and find out more.
Annual Family Weekend
Once a year we bring our families together at Center Parcs in Nottingham for an amazing weekend of fun and community support – read about it here and how you can join us.
Parent/Carer Conference
Every two years we bring together leading experts and parents/carers at our Conference, to share information and knowledge, provide updates and discuss the latest developments.
Supporting Siblings
Insights into life as a sibling of a brother or sister living with Dravet Syndrome and suggestions for providing support to them. This sections includes stories from siblings and their experiences.
Emotional and practical support
We’re here to provide emotional, practical and financial support for families living with Dravet Syndrome. Click here to find out more.
Mental health support
Caring for a child with Dravet Syndrome is life-changing. At DSUK, we believe families deserve support not just for their child, but for themselves.
Talking about SUDEP
SUDEP (Sudden Unexpected Death in Epilepsy) can be a difficult subject. We offer guidance on how to start a conversation with your medical team.
Helpful Resources
A range of guides and leaflets to support families living with Dravet Syndrome on a range of topics with the latest advice.
Dravet Stories
Real life insights into living with Dravet Syndrome shared by our amazing community of families.
Access Ava
The AccessAva tool helps you understand the law governing adult social care in England.
Bereavement support
We understand the devastating impact of losing a loved one to Dravet Syndrome. If the worst should happen, we’re still here to support you. .
Support for Families Overseas
If you’re a family residing outside of the UK, you can find out more about local support organisations here that you help you.