About Dravet Syndrome
Dravet Syndrome is a rare, life-long and life limiting neurological condition. It includes seizures, intellectual disability and a range of associated health conditions known as ‘comorbidities’.
Stay involved in care planning and reviews, and speak up if you think their needs or wishes are not being met. You can still raise concerns at any time if you believe your loved one’s care is too restrictive or no longer meets their needs, even if they are no longer considered to be deprived of their liberty.
If care arrangements are being reviewed following the judgment, you may wish to ask:
The UK's Supreme Court 2026 judgment on what constitutes a deprivation of liberty.
Dravet Syndrome is a rare, life-long and life limiting neurological condition. It includes seizures, intellectual disability and a range of associated health conditions known as ‘comorbidities’.
Here you can find useful information and get practical support in navigating the day to day challenges of living with Dravet Syndrome.
By becoming a Friend of Dravet Syndrome UK, your regular gift can turn uncertainty into dependable support that enables us to reach families when they need us most.