DSUK launches ambitious five-year strategy to guide it’s mission to bring hope to families living with Dravet Syndrome

Charity commits to reaching more families, delivering patient-centred research, improving awareness and understanding amongst professionals, and championing equity in care for children and adults.

Monday 15th February, 2021. Dravet Syndrome UK (DSUK), an independent charity and the only UK organisation dedicated to improving the lives of those affected by Dravet Syndrome, sets out its first strategy, marking an important milestone in the charity’s journey. 

From a group of 30 families who came together looking for mutual support in 2008, to a registered charity helping over 500 families with support, education and research services underpinned by a world class medical advisory board, DSUK has come a long way.  

The new strategy is the result of changes put into motion last year by DSUK’s new board of Trustees. Their first step was to bolster the hard-working staff team, who have achieved so much to date, with the appointment of DSUK’s first Director, Helen Evans. With a view to expanding DSUK's reach, Helen appointed Claire Eldred to the newly-created role of Head of Marketing and Communications, and worked with the existing team on re-defining roles to give added focus to supporting families. 

The Trustee and staff teams include a mix of parents of children or adults with Dravet Syndrome, and other specialists within their field, with the aim of ensuring that the needs of families with Dravet Syndrome remain at the heart of everything the charity does. With the expanded team in place, DSUK is now setting out an ambitious five-year strategy to shape its future development.

“Support for children and adults with Dravet Syndrome has improved significantly during the past decade, but there is still much more work to do”, says Galia Wilson, Chair and Trustee, DSUK. “Families are still waiting too long for a diagnosis. We do not know enough about the comorbidities of Dravet Syndrome and the spectrum nature of the condition. Transition into adult health care services remains challenging and many families struggle to access the statutory support they are entitled to”. 

The new strategy sets out the different ways in which DSUK plans to address the challenges that continue to face families and individuals living with Dravet Syndrome in the UK. 

“We want to reach more families, to deliver research that puts family needs first, to improve awareness and understanding amongst professionals, particularly in adult neurology and social services, and to give families the tools and support needed to assert their rights,” continues Galia. 

“We have set ourselves an ambitious strategy because we believe this is the right time to move forward and, with a fantastic team on board, we have the right capability to do so. Most importantly, this is the right way for us to support everyone who lives with Dravet Syndrome and all its challenges”. 

Click here to read DSUK’s strategy in full. 

Dravet Syndrome is a rare, life-long and life-limiting neurological condition, affecting one in every 15,000 people in the UK. As well as severe, difficult-to-control seizures, Dravet Syndrome encompasses intellectual disability and a spectrum of associated conditions (known as ‘comorbidities’), which may include autism, ADHD, behaviours that challenge and difficulties with speech, mobility, feeding and sleep. 

Every child or adult with Dravet Syndrome is different, with some affected more severely than others, or with a different emphasis across symptoms and comorbidities. But for all, the condition is complex and can be highly unpredictable.

To find out more about Dravet Syndrome visit www.dravet.org.uk.