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What is Dravet Syndrome ?

Dravet syndrome is a rare and severe form of early onset geneticepileptic encephalopathy beginning in infancy characterized by drug-resistant seizures and by cognitive, neurological and behavioural disorders. The first seizure appears in the first year of life (usually at 5-8 months of age) in a normal developing child (Dravet et al. 2011).

 “Severe Myoclonic Epilepsy in Infancy” (SMEI) was first described in 1978 by Dr. Charlotte Dravet and has been recognized as Dravet syndrome since 2001 (Dravet et al. 1978; Engel et al, 2001).

Dravet Syndrome prevalence

Between 1/15,700 &0/40,000
(Wu et al. 2015 ; Hurst et al. 1990)

The management of Dravet syndrome

Treatment of Dravet syndrome requires comprehensive management. In addition to medication, other non-pharmacological treatments may be helpful, along with comprehensive care measures. Families and caregivers play a critical role.

Algorithm of treatment (extracted from Cross et al. 2019)

Family support

Dravet syndrome is a rare and deeply impacting condition for both children and their families. Therefore, throughout the world, families have turned to associations for advice and support.

Family Association