Dravet syndrome hits 1 in 15,700 US births and carries one of epilepsy's highest documented SUDEP rates.

Dravet syndrome is a severe developmental and epileptic encephalopathy that begins in the first year of life, typically with prolonged, often fever-triggered seizures in a previously normally developing infant. A US population-based study at Kaiser Permanente Northern California put incidence at 1 per 15,700 births, roughly twice the earlier estimate of 1 in 40,000, with a likely-pathogenic de novo SCN1A mutation identified in six of eight clinical cases, or about 1 in 20,900. All identified infants had febrile seizures, and most had prolonged seizures lasting more than 10 minutes by age one.

The burden extends well beyond seizure count. In a 100-patient cohort followed for a median of 17 years, 17 patients died at a median age of 7; the syndrome-specific mortality rate was 15.84 per 1,000 person-years and the SUDEP rate 9.32 per 1,000, the highest documented for any epilepsy syndrome and far above the roughly 5.1 per 1,000 reported for refractory epilepsy in adults. Near-universal developmental slowing and intellectual disability compound the burden, making Dravet a lifelong, multi-system condition rather than a seizure disorder alone.

Mortality risk, not just seizure count, defines Dravet's true disease burden.

Five questions this report answers:

Q1 - What is the US incidence of Dravet syndrome, and how has genetic testing changed the estimate?

Q2 - What is the seizure, developmental and mortality burden across Dravet's natural history?

Q3 - How does SCN1A confirmation gate access to Dravet-specific therapy?

Q4 - How common is Dravet syndrome in the United States today?

Q5 - What is the SUDEP and mortality risk for Dravet patients?

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