Sunday 1 June marks the start of Dravet Syndrome Awareness Month 2025, an annual campaign dedicated to raising the profile of Dravet Syndrome and the call for greater awareness, support, and understanding for everyone affected by this devastating neurological condition.
Throughout June, Dravet Syndrome UK (DSUK) is continuing its ‘Little Moments Matter’ campaign theme —a powerful reminder of the small but significant moments that truly matter when caring for a child or adult living with Dravet Syndrome. These moments, often taken for granted by others, are cherished milestones for families navigating the daily challenges of this rare and severe form of epilepsy.
During the month we will be sharing personal stories from families, publishing new research about the emotional impact of caring for a child with Dravet Syndrome and sharing more information about the support we offer families.
Key Dates for Your Diary
- Dravet Syndrome Remembrance Day: 15th June 2025
A day to honour and remember those lost to Dravet Syndrome. The community comes together to reflect, share memories, and support bereaved families. - International Dravet Syndrome Awareness Day: 23rd June 2025
An opportunity for families, advocates, and organisations worldwide to unite in raising awareness of Dravet Syndrome and its impact.
Why Awareness Matters
Dravet Syndrome is a life-limiting epilepsy that affects approximately 1 in every 15,000 people in the UK. It is characterised by frequent, prolonged seizures beginning in infancy, but its impact goes far beyond seizures. Those affected often experience a range of complex challenges, including intellectual disability, autism, ADHD, and problems with sleep, mobility, and language. The condition requires intensive, lifelong care and can lead to frequent hospitalisations.
A lack of awareness about Dravet Syndrome can delay diagnosis and access to appropriate treatment, which can worsen outcomes for families. Early diagnosis is crucial, as it enables timely intervention and support that can make a significant difference in quality of life.
Get involved: how you can help
There are many ways you can support Dravet Syndrome Awareness Month and help make a difference:
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Download and use our customisable social media frame to show your support online and help spread the word.
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Share DSUK’s social media posts and educational resources to help inform others about Dravet Syndrome and the realities faced by families.
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Make a donation to help DSUK continue its vital work supporting families, funding research, and providing education to health and care professionals.
Looking ahead
Stay tuned for a special announcement from DSUK towards the end of the month – watch this space for updates!