Dravet Syndrome
Leading Support for Families Impacted by Dravet Syndrome
Founded in 2009 by parents seeking essential support, Dravet Syndrome UK (DSUK) is dedicated to providing information and resources for those affected by Dravet syndrome, a rare, life-limiting genetic epileptic encephalopathy.
Affecting approximately 1 in every 15,000 births in the UK, Dravet syndrome is marked by drug-resistant seizures and a range of associated challenges, including learning disabilities, autism, ADHD, behavioral difficulties, and issues with speech, mobility, feeding, and sleep.
Dravet Syndrome UK support families emotionally, practically and financially, providing grants, weekends away, conferences and much more.
Tree of Hope collaborates with DSUK to support families whose children have Dravet syndrome, helping them access necessary healthcare interventions, therapies and adaptations around the home to help meet their children's needs.
Support for Families
DSUK is committed to enhancing the quality of life for families impacted by this complex, lifelong neurological condition by:
- Organising and facilitating gatherings and family Meetups
- Hosting regular conferences to provide families with the latest information and resources
- Running and moderating a private online forum, offering a safe space for families to discuss their challenges and access peer support
- Providing families with valuable resources to help them secure the best possible care.
