As Dravet Syndrome is such a complex condition affecting so many areas of life, we host a Parent/Carer Conference every two years, with the aim of providing Parent/Carers with an opportunity to hear from leading professionals, to connect with other families, and to promote a sense of unity, purpose and knowledge within our community.
Our conference is a great opportunity to meet with other parents/carers living with Dravet Syndrome, who are going through exactly the same experiences. It also offers a unique opportunity to meet and to hear directly from expert guest speakers from the UK around the world. From learning about family rights, to discovering insights about the latest research and treatments; from asking Dravet experts your burning questions to sharing experiences with other Dravet families – our conference provides a friendly environment for furthering knowledge and understanding about living with Dravet Syndrome.
Following the presentations from our experts, in-person attendees can take part in breakout sessions that hope to provide practical advice on areas important to families. In 2025, our breakout sessions are:
- Wills and trusts: planning for the future (Philip Watford – Renaissance): Learn how wills and trusts can safeguard people living with Dravet syndrome, ensuring lifelong care, financial security, and continued access to essential benefits
- Living with intellectual disability: adjusting as a family (Dr. Stewart Rust): Adapting to caring for a child with intellectual disability is not easy. Learn how parents move in and out of adjustment, the benefits of a balanced approach, and ways to address everyday challenges.
- Navigating care assessments: getting the support you’re entitled to (Fiona Scolding KC): The session will provide an understanding of social care assessments, the rights involved, and how to prepare to ensure appropriate support is identified and delivered effectively.
- Supporting young siblings: practical advice for families (Sibs UK): Advice on how to support siblings aged 0-17 of people living with Dravet Syndrome.
This conference is designed exclusively for parents and caregivers, providing a supportive environment to learn from experts and connect with others in similar situations. To make this possible, we kindly ask that you don’t bring your child with Dravet Syndrome or siblings to the conference, as we are unable to provide care facilities or activities. We appreciate your understanding and cooperation.
Book to attend our parent and carer conference
Our biennial professional conference next takes place on Saturday 15th November in London and virtually online. It is the only conference in the UK that is dedicated to furthering knowledge about Dravet Syndrome.
Hearing that we were not alone and learning other people’s journeys not only helped us emotionally, but also by sharing experiences it allowed all the families the chance to get advice from people who were actually going through the same thing. When one parent shares similar experiences and can offer some useful hints or things that work for them, it really is priceless and we left feeling more hopeful for the future.Stephanie Smith, Mum to 7-year old Jake, who has Dravet Syndrome.
What to expect
Ahead of our 2021 Conference, we spoke to Jaish – Dad to Sanvi, and Scott – Dad to Thomas, about their experiences of the DSUK Conference. Watch their short film to find out more.
