News | Dravet Syndrome UK
NICE gives green light to fenfluramine
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.
DSUK statement on use of sodium valproate in Dravet Syndrome
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.
Highlights from the DSUK Conference 2021
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.
DSUK Supporter, Tamara, wins ITV Meridian Pride Of Britain Award
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
Interim results from Stoke Therapeutics’ Phase 1/2a US study of STK-001 in children and adolescents (aged 2-18) with Dravet Syndrome.
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
UK approves first gene-specific trial to treat 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.
Topline results from second DSUK survey on the impact of COVID-19 provide reassurance for people affected by Dravet Syndrome
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.
DSUK appoints three new experts to its Medical Advisory Board
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.
DSUK launches ambitious five-year strategy to guide it’s mission to bring hope to families living with Dravet Syndrome
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.
Updates from the British Paediatric Neurology (BPNA) virtual conference, 7th January 2021.
Posted 7th January 2021 in News, Blog
Our take on key insights from today’s sessions at the BPNA.
Survey results provide new data on risks, impact and outcome of COVID-19 in people affected by Dravet Syndrome
Posted 20th October 2020 in News
Data from a survey conducted by Dravet Syndrome UK (DSUK), an independent charity, provides new evidence on the impact of COVID-19 among children and adults with Dravet Syndrome, including the social and psychological impact of shielding.
