What We Do

Dravet Syndrome UK is an independent UK charity dedicated to improving the lives of those affected by Dravet syndrome through support, education and medical research.

1. To support families affected by Dravet Syndrome emotionally, practically and financially.
   
2. To raise awareness and understanding of Dravet Syndrome among medical professionals
   
3. To fund medical research to increase understanding of Dravet Syndrome, improve its management, work towards better outcomes and to hopefully one day find a cure

1. To support families affected by Dravet Syndrome emotionally, practically and financially. 

We do this by

• Providing emotional and financial support through grants and funds including:
  • A seizure monitor fund
  • The 16 plus adult assistance fund
  • A bereaved families fund 
  • Family gathering grants
  • Grants to help fund the annual Dravet weekend away

• Coordinating our annual Center Parcs weekend for families and siblings living with Dravet Syndrome
• Hosting and moderating a UK Dravet Facebook forum, an online network which helps reduce isolation and fosters a sense of community
• Providing literature and information on Dravet Syndrome
• Hosting a biennial Dravet specific conference for Families

2. To raise awareness and understanding of Dravet Syndrome among medical professionals

We do this by: 

• Partnering with leading experts in Dravet Syndrome to improve diagnosis, standards of care and working towards better outcomes
  
• Advising healthcare professionals to help better support their patients and families
  
• Providing literature and resources such as the ‘Professional Guide to Diagnosis’, which aims to aid earlier and more accurate diagnosis of Dravet Syndrome
  
• Hosting a biennial Dravet specific conference for Professionals
  
• Attending and presenting at relevant professional conferences and medical meetings
  

3. To fund medical research to increase understanding of Dravet Syndrome, improve its management, work towards better outcomes and to hopefully one day find a cure.

We do this by:

• Maintaining a dedicated research fund, which receives at least 10% of our annual spending in addition to funds specifically raised or donated by fundraisers and supporters
• Funding at least one medical research project per year (where possible) via grants and awards 
• Partnering with children’s research charities, GOSH and Sparks, to explore pioneering gene therapy for difficult-to-treat epilepsy