New clinical trial opening in treatment of status epilepticus
Posted 17th February 2023 in News
CRESCENT is a new randomised clinical trial opening in treatment of status epilepticus
Posted 17th February 2023 in News
CRESCENT is a new randomised clinical trial opening in treatment of status epilepticus
Posted 13th February 2023 in News
We've launched an updated and expanded version of our Family Guide! Find out more here.
Posted 30th May 2022 in News
In a Final Appraisal Document (FAD), fenfluramine is recommended as an add-on to other antiepileptic medicines for treating seizures associated with Dravet syndrome in people aged 2 years and older.
Posted 22nd April 2022 in News
Further to recent news reports regarding concerns about the prescription of sodium valproate to women & girls of child-bearing age, please read our statement specifically clarifying use in Dravet Syndrome.
Posted 16th December 2021 in News
Our biennial conference took online and in-person in Birmingham. Across two days we brought together over 280 professional & parents/carers with one goal in common - sharing the latest knowledge on Dravet Syndrome.
Posted 1st October 2021 in News
Tamara set up the #Run5KEveryDayinMay Challenge, inspired by her nephew, Dominic, who lives with Dravet Syndrome. We announced last week that Tamara had been shortlisted and now she has been announced as winner of the ITV Meridian Pride of Britain Award
Posted 21st September 2021 in News
We’re excited to share encouraging interim results from Stoke Therapeutics’ Phase 1/2a US study of STK-001 in children and adolescents (aged 2-18) with Dravet Syndrome
Posted 30th March 2021 in News
Stoke Therapeutics announce approval to start clinical trials in the UK for a developmental treatment for Dravet Syndrome, currently known as STK-001.
Posted 24th March 2021 in News
Overall, the results of the survey suggest that the SARS-CoV-2 vaccines are safe and well tolerated in people with DS, as they are in most people without DS.
Posted 22nd February 2021 in News
Epileptologist Professor Mike Kerr, neurologist Dr Julia Aram and Epilepsy Nurse Specialist Amanda Tomalin join the charity’s panel of Dravet Syndrome experts, chaired by Professor Helen Cross, OBE.
Posted 15th February 2021 in News
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.