Independent, authoritative and expert-led information about Dravet Syndrome for healthcare professionals.
Dravet Syndrome is rare, life-long and life-limiting neurological condition, encompassing treatment-resistant epilepsy, intellectual disability and a spectrum of associated comorbidities, which occurs in one in around every 15,000 live births in the UK.
Comorbidities associated with Dravet Syndrome include autism, ADHD, challenging behaviours and difficulties with speech, mobility, eating and sleep. There is also an increased risk of SUDEP (Sudden Unexpected Death in Epilepsy) with Dravet Syndrome (15 times higher than other childhood-onset epilepsies). It is a devastating condition that has a huge impact on all the family.
Dravet Syndrome is a clinical diagnosis, based observable characteristics and symptoms, supported by the identification of variants in the SCN1A gene (found in approximately 85% of cases).
Diagnosis and appropriate treatment is critical for children and adults with Dravet Syndrome.
This open-access resource is intended to provide information for healthcare professionals looking to find out more about Dravet Syndrome. Whether you suspect a patient in your care may have Dravet Syndrome, or want to find out more about the underlying causes of the condition, or you're looking for information on supporting caregivers and their families, there's something here for you.
Click on the links below to find out more.
Characteristics of Dravet Syndrome
Learn more about the characteristics of Dravet Syndrome, including seizures, developmental delay, intellectual disability and comorbidities.
Diagnosing and treating Dravet Syndrome
Early diagnosis and appropriate treatment can change lives for the better - find out more here.
Genetics of Dravet Syndrome
Discover more about the genetic mutations that can cause Dravet Syndrome and how to test for them.
The SCN1A Prediction Model
Is it GFS+ or Dravet Syndrome? This internationally validated tool can aid earlier diagnosis.
Links to NICE guidelines and other key publications for diagnosis, treatment and management of Dravet Syndrome.
Funding research is an essential part of our mission to bring hope to families living with Dravet Syndrome and improve their lives. Read more about our research here.
This section dives deeper into the characteristics of Dravet Syndrome that healthcare professionals need to be aware of, as well as other issues that affect people with the condition.
Could it be Dravet Syndrome?
Download our diagnosis guide for healthcare professionals.
Medical Advisory Board
All our activities are underpinned by guidance and support from a world-renowned Medical Advisory Board.
E-newsletter for healthcare professionals
Sign up to our e-newsletter to get expert news, research and information on Dravet Syndrome direct to your inbox.
Find out more about the only event in the UK dedicated to furthering our understanding of the science of Dravet Syndrome.
UCB Pharma has provided financial support for the development of the Healthcare Professional area of the Dravet Syndrome UK website. UCB has not influenced or been involved in the development of the content.