Meet the Team
DSUK operates across England, Wales, Scotland and Northern Ireland. The team is made up of a small team of trustees and staff.
Dravet Syndrome UK is an independent UK charity dedicated to improving the lives of those affected by Dravet syndrome through three charitable objectives:
- Supporting families affected by Dravet Syndrome emotionally, practically and financially.
- Educating professionals to raise awareness and understanding of Dravet Syndrome.
- Funding medical research to increase understanding of Dravet Syndrome, improve its management, work towards better outcomes and hopefully one day find a cure.
Dravet Syndrome UK operates across England, Wales, Scotland and Northern Ireland, and is made up of a small team of trustees and staff. Our charitable activities are underpinned by guidance and support from a world-renowned Medical Advisory Board.
1. Supporting families affected by Dravet Syndrome emotionally, practically and financially.
Living with Dravet Syndrome can be isolating, which is why family support is an integral part of our work. Support services available to families registered with DSUK include:
- 1:1 emotional support and practical advice via our Family Support Manager (01246 912421)
- Non-means tested grants for equipment or assistance including: a seizure monitor fund, 16 plus adult assistance fund, a bereaved families fund, grants to support families attending the annual Family Weekend Away
- Annual Family Weekend Away at locations such as Center Parcs to bring to together families and siblings living with Dravet Syndrome
- A private, DSUK-moderated online forum to overcome isolation and support a sense of community
- Literature and information, including our ‘Family Guide’, empowering families with knowledge, advice and insights on all aspects of living with Dravet Syndrome
- A biennial conference for parents/carers, including the latest information about Dravet Syndrome with presentations from our Medical Advisory Board and workshops
2. Educating professionals to raise awareness and understanding of Dravet Syndrome
Although support for children and adults with Dravet Syndrome has improved significantly during recent years, there is still much work to do to raise awareness about this rare condition and its impact on families. DSUK takes an active role in leading the evolving conversation about Dravet Syndrome by:
- Partnering with leading experts in Dravet Syndrome to improve diagnosis, standards of care and working towards better outcomes
- Advising healthcare professionals and social care professionals to help better support their patients and families
- Providing literature and resources such as the ‘HCP Guide to Diagnosis’, which aims to aid earlier and more accurate diagnosis of Dravet Syndrome
- Hosting a biennial conference for Professionals, the only UK scientific meeting dedicated to furthering knowledge about Dravet Syndrome
- Attending and presenting at relevant professional conferences and medical meetings
3. Funding medical research to increase understanding of Dravet Syndrome, improve its management, work towards better outcomes and hopefully one day find a cure.
Funding research is an essential part of our mission to bring hope to families living with Dravet Syndrome – and improving their lives. Although understanding of this devastating condition has improved considerably over recent years, many challenges remain. There is an urgent need for research that improves how we diagnose, treat, and manage Dravet Syndrome, and for better understanding of the impact the condition has on family life.
With guidance from our world-class Medical Advisory Board, we work closely with renowned research partners to fund a diverse range of projects. Click here for more information on our research strategy and funded projects.
FAQs about treatments for Dravet Syndrome
There’s currently no cure for Dravet Syndrome. It is, however, an exciting and hopeful time, with much ongoing research into new medicines and treatments.
Just a few years ago we could only hope that one day there would be a treatment that could address the underlying causes of Dravet Syndrome. Thanks to advances in genetic research, we’re much closer to this becoming a reality.
Genetic and gene-based therapies have been successful in treating the underlying causes of other genetic conditions (for example, spinal muscular atrophy), so we have good reason to be optimistic.
Until more new therapies and medicines become available, treating Dravet Syndrome remains highly challenging.
Unfortunately, in terms of seizures, Dravet Syndrome is one of the most treatment resistant epilepsies. Comprehensive testing and a range of support are needed for the multiple challenges that individuals with Dravet Syndrome and their families face.
Because Dravet is changeable and unpredictable, the optimum combination of treatments varies from person to person.
In recent years, there has been some progress in treating seizures with the availability of new medicines, such as Epidyolex (cannabidiol) and Fintepla (fenfluramine).
While these medicines may not be suitable for everyone with Dravet Syndrome, and responses to the treatment vary, it’s encouraging that more options are, slowly, becoming available to help improve seizure control.
Recognising and treating comorbidities associated with Dravet Syndrome can also be challenging. While improved seizure control can often lead to improvements in comorbidities, this is not always the case.
Depending on the comorbidity involved, there are different therapies and approaches available.
Ultimately, working with your medical team and other professionals to find the best treatment, therapy and educational plan for your child or adult is the best way to achieve a good quality of life.
Support for Families
We support all families affected by Dravet Syndrome. Read more here.
Guidance for Healthcare Professionals
View our independent, authoritative and expert-led information about Dravet Syndrome for healthcare professionals.
Our Research
Funding research is an essential part of our mission to bring hope to families living with Dravet Syndrome and improve their lives. Read more about our research here.