Dravet Syndrome Ireland

Dravet Syndrome Ireland is a volunteer-run charity supporting families in Ireland affected by Dravet Syndrome and other complex genetic epilepsies. Its mission is to strengthen family support and improve outcomes for people living with these conditions, while raising awareness and fostering a connected community. The organisation offers practical, financial, educational and social support, including a Family Support Grant and membership. It also shares resources on Dravet Syndrome and epilepsy management, and provides information about SUDEP, governance and family support policies.

To build knowledge and connection, Dravet Syndrome Ireland hosts events and webinars, including a symposium for parents and caregivers featuring speakers on research, adult care and treatment options. Its website also shares personal stories from families, helping others understand the challenges and experiences associated with complex epilepsy. Supporters can contribute through donations and fundraising, with the charity stating that donations are used to support affected families. Registered in Ireland as a company and charity, Dravet Syndrome Ireland combines community-led support, information and awareness work for families navigating rare genetic epilepsies.