COVID-19 and Dravet Syndrome

Welcome to the DSUK resource hub for COVID-19 (Coronavirus). Here you can find advice, information and support services specific to coping with Dravet Syndrome during the COVID-19 pandemic.

We know how tough the lock-down is on everyone, but even more so for our families given the needs of children and adults living with Dravet Syndrome and the difficulties accessing support.  

DSUK staff are remaining working without furlough for the duration of COVID-19 restrictions. We continue to update this COVID-19 resource with information relevant to families living with Dravet Syndrome, and will be maintaining all our support services during the pandemic. Click on the links below for further information.

We want to say a huge thank you to National Lottery’s Coronavirus Community Fund, part of the Government’s £750m support package for charities, for providing DSUK with a £10,000 award, enabling us to provide families impacted by COVID-19 with dedicated emotional and practical support during these challenging times. 

Guidance from our Medical Advisory Board on COVID-19

Dravet-specific guidance on the implications of COVID-19, developed in consultation with our Medical Advisory Board, chaired by Professor Helen Cross. Includes Frequently Asked Questions and links to our webinar series.

DSUK survey: the impact of COVID-19 on people affected by Dravet Syndrome

Findings from our survey conducted during the first wave of the pandemic. Now published online in Acta Neurologica Scandinavica,

Support services provided by DSUK throughout COVID-19

We know how tough the lock-down is on everyone, but even more so for our Dravet families given the needs of your children and the difficulties accessing support. Our Family Support Manager and Dravet mum, Teresa Finch, is here to help.

16+ assistance fund - a grant to improve the lives of young Dravet adults at home

With the lock-down, we know there's even more need for items of equipment or assistance for young Dravet adults. Our 16+ assistance fund is available to fund items that will improve the life of adults with Dravet Syndrome.

Stay alert to seizures during lockdown - apply to our Seizure Monitor Fund

Now more than ever we know how important monitors are to families, alerting them to seizures as well as monitoring sats (oxygen saturation levels), which can be of particular concern if someone becomes unwell with COVID-19.

A list of helpful resources to support family wellness during COVID-19

These resources include: advice for parents, helping young people manage anxiety, supporting those with autism or challenging behaviours, and links to a variety of disability grants.

Are you a healthcare professional looking for information on Dravet Syndrome?

Visit our healthcare professional section for more resources, including information on common drug-drug interactions for Dravet Syndrome and COVID-19.

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