Dravet Syndrome is a life-changing condition. Having a family member with Dravet Syndrome affects the entire family and can impact many areas of life that most families take for granted.
Adjusting to living with Dravet Syndrome is not easy. It brings with it a host of challenges and rewards that many families might not anticipate or expect. For some, it can feel like a very isolating condition.
At Dravet Syndrome UK, we want you to know that you are not alone. We’re here to provide practical and emotional support throughout your journey as a family living with Dravet Syndrome. We’re here as much or as little as you need us.
Emotional and practical support services available to families registered with DSUK include:
- A welcome pack containing essential information about Dravet Syndrome, including a free print copy of our Family Guide and a cuddly ‘Hope’ bear.
- Access to one-to-one support from our Family Support Team (see Contact Us). With personal experience of living with Dravet Syndrome, our Family Support Team knows what its like to be in your shoes and has the professional experience and knowledge to help you through the challenges of everyday life with Dravet Syndrome. Whether you’re looking for practical advice, for example around asserting your rights and accessing the support and care to which you and your family are entitled or just needing to talk to someone who understands what you’re going through – we’re here to support and empower you.
- A private Facebook Group – this moderated online community is a warm and welcoming source of peer support, bringing together those uniquely affected by being a parent/carer to someone living with Dravet Syndrome. It’s safe space where parents/carers can share highs and lows, ask questions and seek information and advice. If you’re already registered with DSUK and would like to join the Facebook group, contact us here.
“DSUK is a charity that has changed our life for the better. Their expert advice is invaluable as is the private Facebook group. They make you feel you’re not alone in this.”
- The opportunity to join our Annual Family Weekend Away at locations such as Center Parcs to bring to together families and siblings living with Dravet Syndrome, helping to overcome the isolation that living with a rare condition can bring.
“We have been to the family weekend away three times and made some great friends. It allowed me to go and relax with others who know what life is like living with Dravet Syndrome, but not to actually discuss the problems – to be normal!”
- Literature and information, including our ‘Family Guide’ and ‘Transition Guide’, empowering families with knowledge, advice and insights on all aspects of living with Dravet Syndrome.
- A conference for parents/carers, including the latest information about Dravet Syndrome with presentations from leading experts, including our Medical Advisory Board and interactive workshops. The conference takes place every other November, with the next Conference scheduled for Saturday 15th November 2025.
“We’ve attended the DSUK Conferences, which have left us feeling very positive – it became apparent that there are professionals fighting to get a better understanding of our child’s condition and to find ways to better manage it. We would highly recommend attending a future conference.”
- A bereavement service for families who have sadly lost a loved one to Dravet Syndrome. If the worst should happen, we’re still here to support you. We provide a comprehensive support pack, tailored to the situation of each family, a bereavement grant and access to a private Dravet Syndrome bereavement forum, run by bereaved parents, for bereaved parents.
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A guest blog from the US Dravet Syndrome Foundation on understanding and learning to cope with the stress and trauma of a living with a life-changing condition such as Dravet Syndrome