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.
- To support families affected by Dravet Syndrome emotionally, practically and financially.
- To raise awareness and understanding of Dravet Syndrome among medical professionals
- 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
- Providing emotional support and practical advice via our Family Support Manager
- 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:
- Funding at least one research project per year (where possible) with £500k awarded to date by DSUK
- Working closely with world-renowned UK clinicians and our research partners, including Great Ormond Street Children's Hospital Charity, the Dravet Syndrome European Federation, Epilepsy Action and the Epilepsy Society
- Before receiving a grant, all potential projects go through a robust approval process, including peer review.
