What We Do

Dravet Syndrome UK is an independent UK charity dedicated to improving the lives of those affected by Dravet syndrome through three charitable objectives: 

1. Supporting families affected by Dravet Syndrome emotionally, practically and financially. 
   
2. Raising awareness and understanding of Dravet Syndrome.
3. 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 new ‘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. Raising 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.