Helpful Resources

As part of our mission to support families living with Dravet Syndrome and to raise awareness among healthcare professionals, we provide a range of guides and leaflets. Our aim is to enable families and professionals to access the best possible care and to have the most up to date information on the Dravet Syndrome. Resources can be downloaded from this section, alternatively hard copies can be sent out on request. Links to other websites which you might find useful can be found here.

Guides

Education and your rights

All children and young people living with Dravet Syndrome will need some additional support to help them learn and thrive. In this guide, you can find out more about Education, Health and Care Plans, as well as SEN support.

Guides

Social services and your rights

A person with Dravet Syndrome will require a level of support throughout their life. In this guide we cover the areas of support and entitlements available from local authorities and provide advice on challenging decisions.

Guides

Growth, digestion and nutrition

Around 60% of people living with Dravet Syndrome show some growth and nutrition issues. Discover more about eating, drinking, swallowing, tube feeding, digestion and toileting in this guide.

Guides

Dravet Syndrome UK Family Guide

An essential guide aimed at parents and carers to support their Dravet journey - it covers every aspect of living with Dravet Syndrome and its impact on family life.

Guides

Transition to Adulthood Guide

A guide to support and inform families living with a young person with Dravet Syndrome; it provides practical advice on navigating the challenges of transition and managing the impact on family life.

Guides

Understanding Dravet Syndrome

Authored by the Prince of Wales’s Chair of Childhood Epilepsy, Professor Helen Cross OBE, this guide gives a brief overview of Dravet Syndrome, symptoms and treatment.