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.
News | Dravet Syndrome UK
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.
Cannabidiol (Epidyolex) approved in Scotland for individuals living with Dravet Syndrome, a life-limiting epilepsy
Posted 7th September 2020 in News
DSUK welcomes the availability of Epidyolex via NHS Scotland as a treatment option for individuals living with Dravet Syndrome
Welcoming Neil Williamson as our new Trustee
Posted 2nd September 2020 in News
We’re delighted to announce that Neil Williamson, a Children’s Epilepsy Nurse Specialist, is joining the DSUK board of Trustees.
Living with Dravet Syndrome During COVID-19 Lockdown
Posted 24th June 2020 in News
What has life in lockdown meant for UK families with a life-limiting epilepsy, known as Dravet Syndrome & how has DSUK helped? Watch our short video to find out.
Watch our 'Dravet Syndrome in the COVID-19 pandemic' webinar with Professor Helen Cross
Posted 7th April 2020 in News
On Monday 30th March, Professor Cross, a globally-recognised authority on Dravet Syndrome and Chair of our Medical Advisory, presented a webinar on the implications of COVID-19 for Dravet individuals.
Latest Coronavirus Guidance for Children and Adults with Dravet Syndrome (30th March)
Posted 4th March 2020 in News
Guidance from the Dravet Syndrome UK Medical Advisory Board
Dravet Syndrome UK Winter 2020 Newsletter
Posted 18th February 2020
A wrap up of all our news from the past six months, and a preview of events coming up in 2020.
