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.

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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.

Guides For Families

Dravet Syndrome Family Guide

An essential 68-page 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 For Families

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 For Families

Could it be Dravet? A Diagnosis Guide for Health Professionals

Dravet Syndrome is under-diagnosed. Being aware of its typical features and intervening early to request testing is critical to help reduce the burden of disease and ensure an appropriate treatment plan is in place.

Guides For Healthcare Professionals

Supporting those with Dravet Syndrome: Guidance for Care Providers

A guide for those responsible for awarding or providing short breaks (respite), care or support to children or dependent adults with Dravet Syndrome and their parents and families

Guides For Healthcare Professionals

The Impact of Caring for a Loved One with Dravet Syndrome

A shareable infographic showing the substantial financial, physical, psychosocial and emotional burden of caring for child with Dravet Syndrome.

Guides For Healthcare Professionals For Families