Creating Connections : A Dravet Syndrome Ireland - FutureNeuro Alliance

This event is being  hosted on June 10th 2023,  by Dravet Syndrome Ireland and the SFI FutureNeuro Research Centre for chronic and rare neurological diseases, with the support of Dublin Sports Partnership, Sports Inclusion Disability Officer (SIDO). The purpose of the event is to bring families and caregivers affected by Dravet Syndrome or other complex genetic epilepsies together with FutureNeuro researchers and clinicians for a day of learning, information, informal networking and children’s fun activities. By co-hosting the event with FutureNeuro, Dravet Syndrome Ireland will strengthen their relationship with clinicians and researchers working in the area of epilepsy. The format of the event is designed to strengthen the community of families living with Dravet Syndrome and other complex genetic epilepsies in Ireland, and contribute to a shared agenda for prioritization of research and clinical care.  

 It is often very difficult for parents of children with complex epilepsies to travel to educational events specific to complex epilepsy due to the care needs of their children and the rare nature of their conditions. This event will give parents and caregivers the opportunity to hear about the latest treatments and current research in complex genetic epilepsies while enjoying a day out with all the family. Equally, clinicians and researchers will hear of the lived experiences of families with Dravet Syndrome.  The event will support accompanying children with complex epilepsies and their siblings by providing fun inclusive activities for all the family throughout the day.

The event will include talks by clinicians and researchers, discussions with parents and caregivers, shared lunch and children’s activities such as professional magic show, movie time and movement activities.

The outputs, outcomes and impacts of the event will be shared on social media channels with a reflective case study hosted on both the Dravet Syndrome Ireland and FutureNeuro websites.

Award Date

05 April 2023

Award Value

€5,000

Principal Investigator

Professor Norman Delanty

Host Institution

RCSI

Scheme

Conference and Event Sponsorship Scheme