FINALIST 2025
Dravet Syndrome is a devastating and life-limiting neurological condition affecting around 1 in 15,000 babies in the UK. As well as severe, difficult-to-control seizures, Dravet Syndrome encompasses intellectual disability and a spectrum of associated conditions (known as ‘comorbidities’), which may include autism, ADHD, behaviours that challenge and difficulties with speech, mobility, feeding and sleep. Every child or adult living with Dravet Syndrome is different, with some affected more severely than others, or with a different emphasis across symptoms and comorbidities. But for all, the condition is complex and can be highly unpredictable.
Dravet Syndrome UK (DSUK) was created in 2008 by a group of parents who came together looking for support, resources and information relating to Dravet Syndrome. Today we support over 550 families across the UK. We are an independent charity and the only UK organisation dedicated to improving the lives of those affected by Dravet Syndrome
Our mission
To bring hope to UK families living with Dravet Syndrome through support, education and medical research
Our strategic objectives
1. Every family counts
Every UK family living with Dravet Syndrome will be aware of DSUK and the support available, be enabled to access this support as required, and know that all activities and research are driven by the things that matter most to them.
2. Leaders in the field
DSUK will lead the conversation about Dravet Syndrome in the UK, making the best possible use of its research funds, collaborating internationally as opportunities arise, and developing an authoritative global voice.
3. Support for professionals
We will seek to broaden the range of health and social care professionals with an improved understanding of Dravet Syndrome, enabling earlier diagnosis and providing accessible pathways to the best possible treatment and care for all ages.
4. Empowerment of families
Families living with Dravet Syndrome will know and understand their rights and feel empowered to assert these rights to get the support they need.
We align with the following UN Sustainable Development Goals:
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