DSUK Family Guide
At Dravet Syndrome UK, supporting families is at the heart of everything we do. Our Family Guide is for everyone affected by a diagnosis of Dravet Syndrome. 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.
For more than 14 years Dravet Syndrome UK has been the only UK charity dedicated to improving the lives of families affected by this rare condition. Our Family Guide is the culmination of knowledge, lived experience and insights that we have gathered over the years, informed by the real-life experience of families, the expertise of our world-class Medical Advisory Board, and research about Dravet Syndrome.
The Family Guide is a comprehensive resource, reflecting the complex nature of Dravet Syndrome and its effect on every area of life.
Receiving a diagnosis of Dravet Syndrome can be a scary time, so if you are a newly- diagnosed family, the first section ‘About Dravet Syndrome’ is a helpful introduction.
The other sections of the guide cover every aspect of Dravet Syndrome in detail – from the characteristics of the condition and advice on managing these, to dealing with the challenges faced in everyday life.
Join us to receive a free copy of the DSUK Family Guide
All parents/carers of children and adults with Dravet Syndrome, who are registered with DSUK are entitled to a free printed copy of the guide. If you're registered with us and have not yet received your guide, let us know on info@dravet.org.uk.
If you're a parent/carer with a diagnosis of Dravet Syndrome and not already registered with DSUK, join us to make sure you receive your copy of the Family Guide.
A digital version of the Family Guide can be downloaded here.
If you'd like to order additional printed copies, please visit our shop here.
Family Guide Resources
If you've received your Family Guide, you'll see there's lots of signposting to our 'Family Guide Resources' page. This is a regularly updated webpage, where we've housed all of the links through to more detailed information and places where you can find out more or access further support.
Read MoreYou can also find short guides on the below topics (taken from our Family Guide) in our Helpful Resources section, here.
- Seizures: types, triggers and what to expect
- Emergency medication and protocols
- Growth, digestion and nutrition
- Social services and your rights
- Education and your rights
- Living options
