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Dravet Syndrome Awareness Day 2023

Today, along with our charity partners, Epilepsy Research UK is supporting International Dravet Syndrome Awareness Day.

Dravet syndrome is a rare complex form of epilepsy affecting one in every 15,000 people in the UK. As well as causing seizures, which are often treatment-resistant, Dravet syndrome encompasses intellectual disability and a spectrum of associated conditions including autism, ADHD, challenging behaviours and difficulties with speech, mobility, eating and sleep.

Epilepsy Research UK is proud to have worked with Dravet Syndrome UK (DSUK) in ensuring the UK Epilepsy Priority Setting Partnership, that determined the research priorities for epilepsy, reached people affected by Dravet syndrome. In today’s Research Blog, we share insights from Claire Eldred (Director) and Galia Wilson (Chair) into the challenges posed by Dravet syndrome. We also see how DSUK brings hope to families living with the condition through support, education and medical research.

"The findings of the project have significant implications for current practices and future research and highlighted the urgent need for increased research investment."

Funding and supporting research into Dravet syndrome.

Epilepsy Research UK has supported several researchers over the years who are working to improve the diagnosis, treatment and clinical management of Dravet syndrome. #Every1EndingEpilepsy Steering Group member Professor Sameer Zuberi is on the Medical Advisory Board for Dravet Syndrome UK. In 2015, Professor Zuberi was funded by Epilepsy Research UK to build and develop a research database on epilepsies that start in childhood. This research uncovered that Dravet syndrome is more common than previously thought, occurring in around 1 in every 15,000 live births in the UK. You can read about ‘The Genetic and Autoimmune Childhood Epilepsy Study’ in this blog: Finding answers: The GACE (Genetic and Autoimmune Childhood Epilepsy) study Epilepsy Research UK President and Global President of the International League Against Epilepsy, Professor Helen Cross OBE is Chair of Dravet Syndrome UK’s Medical Advisory Board. Professor Cross is widely regarded as a world leader in the treatment and management of Dravet syndrome and has pioneered clinical trials in new and innovative treatment pathways for the condition. Former Epilepsy Research UK Emerging Leader Fellow Dr Gabriele Lignani, based at University College London, has been investigating the potential use of new gene therapies in Dravet syndrome. This research has been supported by an MRC New Investigator Grant of £700,000. But what is gene therapy? Find out in Dr Lignani’s blog here: What is gene therapy, and what could it mean for people with epilepsy? For more information about Dravet syndrome, please contact Dravet Syndrome UK, via their info@dravet.org.uk

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