Dravet Syndrome UK

Who we are

Dravet Syndrome UK is an independent UK charity dedicated to improving the lives of those affected by Dravet syndrome through support, education and medical research.

The charity was founded in October 2008 and registered with the Charity Commission of England and Wales in January 2009. It was founded by parents looking for support and information about treatments and research, all of which was sadly lacking in the UK at that time. Since the charity was founded the membership has risen from just thirty families to almost four hundred.

Our Mission Statement

Dravet Syndrome UK is an independent UK charity dedicated to improving the lives of those affected by Dravet syndrome through support, education and medical research

Dravet Syndrome UK operates on a national level and is made up of a team of trustees and five world-renowned professional advisors. This small team work very closely together to ensure we meet the needs of families affected by Dravet syndrome, whilst working with professionals in the field of neurology on research projects.

Dravet Syndrome UK has three primary aims:

To support families affected by Dravet syndrome emotionally, practically and financially:

• Hosting and moderating a UK Dravet Facebook forum providing an online community network and reducing the sense of isolation
• Emotional and financial support through monitors and grants
• Coordinating our annual Dravet weekend away for families and siblings
• Operating the night-time assistance programme
• Operating the 16+ assistance fund
• Provision of literature and information on Dravet syndrome
• Hosting a biennial Dravet specific conference

To fund medical research into Dravet syndrome and other related genetic sodium channel epilepsies:

• 2017 research grant award of £18,560 for 'SCN1A and childhood developmental and epileptic encephalopathy research' with Professor Zuberi to develop a new computer simulation tool for the sodium channel SCN1A mutations.
• 2015 research project award of £63,000 for ‘Genetic Influence on Cognitive Function’ with Professor Sanjay Sisodiya and his team at University College Hospital, London
• 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
• Biennial Dravet UK conference for Families and Professionals
• 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