Dravet Syndrome Awareness Month

We're delighted to announce that following our first and hugely successful Dravet Syndrome Awareness Month in 2021, it's back for 2022! Join us in sharing facts, stories and activities to raise awareness of Dravet Syndrome across the UK this June.

We're continuing the theme of ‘Every Family Counts’. Families are at the heart of everything we do at DSUK. We’ve grown from a small charity, set up by a group of parents in 2008, to supporting more than 500 families.We know there are more families out there. Families who may not yet have a diagnosis of Dravet Syndrome but are struggling with all the challenges the condition brings without support. Or families who have a diagnosis but are unaware of the support available. This June, we’ll be asking for your help to reach as many families as possible - to raise awareness to find those ‘missing’, undiagnosed children and adults, to ensure they have the support they need. And to let ALL families living with Dravet Syndrome know that we are there for them.

Key Dates

Dravet Syndrome Awareness Month will run for the whole of June, with two extra special dates to add to your diaries;

Dravet Syndrome Remembrance Day: Wednesday 15th June

Dravet Syndrome Awareness Day: Thursday 23rd June

Get Involved

There's a number of ways in which you can get involved and help to raise awareness of Dravet Syndrome:


Press Coverage

Thank you to all the families who have worked with us this Dravet Syndrome Awareness Month, sharing their stories to local media. Coverage like the below is really important in helping us find those 'missing', undiagnosed children and adults, to ensure they have the support they need. Every Family Counts, this month and always.

Penny (Parents, Adam & Carrie):

Liam (Parents, Liam & Clare): 

Harry (Mum, Emma):

Paige (Parents, Martin & Gemma): 

Frankie (Mum, Stacey): 

Iwan (Parents, Kelvin & Heather):

Paige (Parents, Sam & Mike):

Joe (Parents, Emily & Toru):

Tom (Parents, Sue & Andrew):

Dravet Syndrome Remembrance Day

Dravet Syndrome Remembrance Day will take place on 15th June and will be a time for our community to reflect and remember those whom we have so sadly lost. We mark this day by sharing our permanent, virtual, Wall of Remembrance, dedicated to our loved ones who are no longer with us.

Families who have experienced a bereavement due to Dravet Syndrome are invited to submit their loved one’s name to be included on our Wall of Remembrance via info@dravet.org.uk, if they wish to do so.