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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.
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.
Transition Guide
This updated version of our Transition Guide aims to support and inform families living with a young person with Dravet Syndrome, providing practical advice on navigating the challenges of transition to adulthood and managing the impact on family life.
Emergency medication and protocols
Find out more about emergency protocols, practicalities of using rescue medications, initial emergency treatment in hospital and ventilation, in this short guide.
Living options for young people and adults living with Dravet Syndrome
This guide includes information on the four main living options - the family home, supported living, residential care or their own home with carer support.
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.
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.
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.
Seizures: types, triggers & what to expect
Seizures are a defining characteristic of Dravet Syndrome. Find out more about the types, triggers and what to expect, here.
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.
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.