Resources

Essential reading

In recent years, there have been a number of updated guidelines, consensus statements and other publications outlining the appropriate treatment algorithm for Dravet Syndrome. These are listed below with links to the publications:

• NICE guidelines – Dravet Syndrome is section 6.1: National Institute for Health and Care Excellence, Epilepsies in children, young people and adults, 2022.
• The NICE Technology Appraisal for fenfluramine (Fintepla) was completed after the NICE guidelines publication: Fenfluramine for treating seizures associated with Dravet syndrome, 2022.
• In 2022, the ILAE updated the classification and definition of Dravet Syndrome: Sameer M. Zuberi et al. ILAE classification and definition of epilepsy syndromes with onset in neonates and infants: Position statement by the ILAE Task Force on Nosology and Definitions, Epilepsia 2022
• European consensus statement and roadmap: Elena Cardenal-Muñoz et al. ‘Guidance on Dravet syndrome from infant to adult care: Road map for treatment planning in Europe’ Epilepsia, 2021.
• Treatment algorithm, including rescue medication: Helen J. Cross et al. ‘Dravet syndrome: Treatment options and management of prolonged seizures’ Epilepsia, 2020.
• North American consensus: Elaine C. Wirrell et al. International consensus on diagnosis and management of Dravet syndrome, Epilepsia 2022.

Personal stories

Watch this video featuring Gordon, Neil’s dad, talking about the life changing impact of his son being diagnosed with Dravet Syndrome as an adult.

Read parents Mark and Fiona’s story of getting a diagnosis for their daughter Hannah.