Dravet Syndrome UK

07874 886937
linzi.c@dravet.org.uk
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Dravet Syndrome UK is an independent UK charity (registration number: 1128289) dedicated to improving the lives of children and adults living with Dravet Syndrome and other related genetic sodium channel epilepsies through medical research, education and awareness and support. Dravet Syndrome UK has three primary aims: To fund medical research into Dravet Syndrome and other related genetic sodium channel epilepsies: 2013 research grant of £22,000 looking into heart arrhythmia and the possible connections between Dravet Syndrome and SUDEP 2012 research grant of £29,950 looking into the roles of SCN2A, SCN1B and GABRG2 in Dravet patients who have tested negative for the SCN1A gene 2011 research grant of £39,000 looking into the genetic factors affecting mortality, cognitive function and causes of Dravet Syndrome Funding commitment of £47,000 to part fund a Research and Database Manager at Yorkhill Hospital in Glasgow To raise awareness and understanding of Dravet Syndrome within the professional community: Publication of the 'Professional Guide to Diagnosis', which aims to aid earlier and more accurate diagnosis of Dravet Syndrome Attendance of relevant professional conferences and meetings to raise the profile of Dravet Syndrome within the medical community Presenting at professional conferences Providing literature to professionals and the opportunity to attend the biennial Dravet specific conference To support families affected by Dravet Syndrome emotionally, practically and financially: Hosting and moderating a UK Dravet forum Organising get togethers and our annual Dravet weekend away Putting families in touch with one another Operating the night-time assistance programme Operating the adult assistance fund Provision of literature and information on Dravet Syndrome Hosting a biennial Dravet specific conference Dravet Syndrome is a catastrophic neurological condition causing severe seizures alongside other conditions such as learning disability, ataxia and autism.