Dravet Syndrome UK appoints leading paediatric neurologist Dr Elaine Hughes as trustee

Dravet Syndrome UK is delighted to announce the appointment of leading paediatric
neurologist Dr Elaine Hughes to their Board of Trustees. Dr Hughes brings a wealth of
clinical and strategic experience to further advance the charity’s mission to bring hope to
families living with Dravet Syndrome through support, education and medical research.
Dravet Syndrome UK is a small, independent UK charity dedicated to improving the lives of
those affected by Dravet Syndrome, a devastating and complex form of epilepsy affecting
around 1 in 15,000 babies.

Dr Hughes retired in October 2025 from her role as Consultant Paediatric Neurologist at
Evelina London Children’s Hospital and Kings College Hospital. During her career, Dr
Hughes has been instrumental in transforming how children and young people with Dravet
Syndrome receive care in the UK. As a longstanding advocate for families living with Dravet
Syndrome, she has encouraged focus on the wider impact of the condition beyond seizures.
Through establishing the first specialist Dravet Syndrome clinic in the UK, she has led the
way in a multidisciplinary approach to management which is a model for good practice.
Dr Hughes was a founding member of Dravet Syndrome UK’s Medical Advisory Board and
has played a key role on this forum helping to guide the charity’s information resources,
research priorities and support for families affected by Dravet Syndrome. She will be
stepping down from her role on the Medical Advisory Board to join the charity’s Board of
Trustees.