Scarlett was born in 2014 and was diagnosed with Dravet Syndrome aged 2 years old
If you're a newly diagnosed parent or carer looking for more information, or if you're a healthcare professional and you suspect Dravet Syndrome, you've come to the right place.
Visit our brand new online resource about the genetic mutations that cause Dravet Syndrome, genetic testing and what advances in understanding mean for future treatments.
Our online resource hub has been developed with our Medical Advisory Board, chaired by Professor Helen Cross, and contains advice, information and support services specific to coping with Dravet Syndrome during the coronavirus lockdown and beyond.
Dravet Syndrome is a rare condition - this means many people are incorrectly diagnosed or not diagnosed at all. Diagnosis at any age - including late adulthood - has significant benefits, enabling effective treatment and improving quality of life. Help us find those 'missing' or undiagnosed children and adults living with Dravet Syndrome - download and share our 'Could it be Dravet?' guide for healthcare professionals this Dravet Syndrome Awareness month.Download here
Dravet is more than seizures. It also encompasses learning disability and a spectrum of associated conditions (known as comorbidities), which may include autism, ADHD, challenging behaviour and difficulties with speech, mobility, feeding and sleep.Read More
Real life insights about living with Dravet Syndrome shared by our amazing community of families.