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About us
Who we are
Dravet Syndrome is a rare, life-limiting and life-long neurological condition affecting around 1 in every 15,000 people. It is a spectrum disorder, causing severe, treatment-resistant seizures, varying degrees of intellectual disability, autism, behaviours that challenge, and difficulties with speech, mobility, feeding and sleep. Dravet Syndrome is a clinical diagnosis and in 85% of cases is caused by a mutation in a gene known as SCN1a.
Dravet Syndrome UK (DSUK) is an independent charity dedicated to improving the lives of those affected by Dravet Syndrome through support, education, and medical research. The charity was created in 2008 by a group of parents who came together looking for support, resources and information relating to Dravet Syndrome. Today, DSUK’s database has grown to over 500 families across the UK.
