Dravet Syndrome UK
Dravet Syndrome UK was created in 2008 by a group of parents who came together looking for support, resources and information relating to a rare, little known neurological condition called Dravet Syndrome.
Today, our database has grown to over 500 families across the UK. We are an independent charity and the only UK organisation dedicated to improving the lives of those affected by Dravet Syndrome.
Dravet Syndrome is a complex and devastating condition. Living with a child or adult who has Dravet Syndrome can be a very difficult and potentially isolating experience for families. From a medical perspective, there is an urgent need for more research into the causes and complexities of the condition, in order to identify more effective approaches to diagnosis and treatment.
Our mission is to bring hope to families living with Dravet Syndrome through support, education and medical research.
What is love when living with Dravet Syndrome?
KSI thanks young Dravet Syndrome UK fundraiser on The One Show
Sign up to Every Day in May 2025
Dravet Syndrome UK 2024 Impact Video
Professor Ingrid Scheffer on vaccinations and Dravet Syndrome
SCN1A Horizons Study at Evelina Children's Hospital - How to get involved
The SCN1A Horizons Study - the neuropsychological aspects explained
SCN1A Horizons Study - What to expect at a neuropsychology appointment
Professor Andreas Brunklaus - How SCN1A Horizons will impact the rare epilepsy community
Professor Andreas Brunklaus - SCN1A Horizons data collection and what study participation involves
Professor Andreas Brunklaus - the SCN1A Horizons Natural History Study
Little Moments Matter - Dravet Syndrome Awareness
Genetic Advances and Dravet Syndrome with Professor Ingrid Scheffer
Dr Lisa Clayton explains her research project which is looking at dysautonomia in Dravet Syndrome
Dr Jenna Carpenter explains her research project exploring a gene therapy for Dravet Syndrome
Dr Lisa Clayton explains the results of her study looking at feeding issues in Dravet Syndrome
Dr Lisa Clayton gives advice about feeding difficulties in Dravet Syndrome and what to do
First Time Families
The Power of Friendship
Living with Dravet Syndrome as an adult
Highlights from the DSUK Parent/Carer Conference 2023
Tamara Every Day in May 4 Dravet Thank you Video 2023
Dravet Awareness Day 2023 - Dravet in one word
Joe's Story - Coming to terms with Dravet Syndrome
Hannah's Story
Calla Rose's Family - Talking to others: 'A Dad's Perspective'
Dravet Syndrome UK - Siblings at the Annual Family Weekend
Penny's Family - Learning to live with Dravet Syndrome
Emily's Family - Coming to terms with Dravet Syndrome
Dr Elaine Hughes - What do we mean by the term Comorbidities?