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 pandemic 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.  

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.

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 surveys on the impact of COVID-19

Findings from two surveys exploring the impact of the pandemic on individuals with Dravet Syndrome, conducted in June-July 2020 and in February 2021, respectively.

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.