Watch our new video for Dravet Syndrome Awareness Day 2023

Posted 23rd June 2023 in News

Dravet Syndrome in one word

As part of Dravet Syndrome Awareness Day 2023, we’ve produced a new video looking at what life is like for people with the condition and their families. 

Dravet Syndrome is a devastating and life-limiting epilepsy that affects one in every 15,000 people in the UK.

We asked families who live with Dravet Syndrome to tell us what it means to them in one word.

For many families, that's not an easy question to answer. Dravet Syndrome is a spectrum, and affects everyone differently.

There is an urgent need for more support for families, more education and more research. Too many children and adults are misdiagnosed, or are diagnosed too late.

Diagnosis at any age – including late adulthood – and getting the right treatment in place improves health and quality of life, which can help reduce the risk of life-threatening seizures.

The good news is, you can help.

Please share this film on your social media channels, and help us build more awareness of the impact of Dravet Syndrome.