Dravet Syndrome Ireland is a registered charity established by parents in 2020 to support the community of families affected by Dravet Syndrome and other severe genetic epilepsies in Ireland. Our mission is to support families and improve outcomes for individuals affected through provision of information resources, facilitation of a family network, hosting educational and social events, advocacy for persons affected, engaging in activities which improve outcomes for persons affected, raising awareness and campaigning for access to improved treatments in Ireland.
Dravet Syndrome is a rare and severe form of drug resistant epilepsy, with an estimated incidence of 1:20,000. It begins in infancy with frequent and/or prolonged seizures. Dravet Syndrome is a lifelong condition and can affect every aspect of a person’s life with varying degrees of learning disability, mobility problems, speech difficulties and feeding problems. There is much to navigate with a child with a diagnosis of severe genetic epilepsy and Dravet Syndrome Ireland is here to share information and provide support.