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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.
Paramedic/Ambulance Resource Pack
Paramedics and ambulance crews are often the first to attend families living with Dravet Syndrome in their time of need. DSUK have developed a resource pack to not only say thank you to all the crews who attend but to also give them as much information as possible.
Letter to teachers of siblings with a brother or sister with Dravet Syndrome
Sometimes the ups and downs of living with a brother or sister who has Dravet Syndrome can impact school life. One of our families shared a letter for teachers setting out the different ways in which a sibling’s daily life could be disrupted by Dravet, both at school and home.
GP Letter Template
This letter can be given to your GP Practice to signpost them to helpful resources around Dravet Syndrome, including materials produced by DSUK that can be made available in their waiting room for families looking for a diagnosis or wanting ongoing support as they navigate life with this condition.
Emergency Situation Tips & Checklist
This checklist has been created by parents, carers, and the team at Dravet Syndrome UK. It brings together lived experience and expert advice to help you feel more prepared in emergency situations.
A guide for families – your mental health and accessing support
A guide for parents and carers based on the latest research about the mental health impact of caring for someone with Dravet Syndrome and how to access support.
Professionals guide – carers mental health and support to offer
A guide for professionals based on the latest research about the mental health toll it takes to care for someone with Dravet Syndrome and how professionals such as GPs, neurologists, epilepsy nurses or social care workers can support families.
Dravet Syndrome UK Health and Care Professionals Network Leaflet
Join our Health and Care Professionals Leaflet and discover the benefits of joining our network and keeping up-to-date with the latest news, research and information on supporting families with Dravet Syndrome.
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.