Epilepsy Research Institute UK
In 2024, we partnered with the Epilepsy Research Institute to invest in two future leaders in Dravet Syndrome and epilepsy research.
At Dravet Syndrome UK, we strongly believe in the power of collaboration to make a difference. If you or your organisation would like to discuss working with us, please contact our Director, Claire Eldred, on [email protected]
We are delighted to be working with the following organisations;
Chan Zuckerberg Initiative – Rare As One Network
The Chan Zuckerberg Initiative invites applications for five-year projects from patient-led rare disease advocacy organizations to join the Rare As One Network. Grantee organisations will accelerate research within individual disease areas and work across specified areas of scientific focus to develop shared research priorities and proposals.
In 2024, we were thrilled to be one of the first international patient organisations to join the Chan Zuckerberg Initiative’s Rare As One (Cycle 3) network, receiving a 5-year capacity building grant to help accelerate our research and scientific engagement activities and drive collaboration, particularly within the channelopathy area of scientific focus.
Further information is available at: Rare As One Project – Chan Zuckerberg Initiative and Rare As One Network RFA – Chan Zuckerberg Initiative.
Epilepsy Research Institute UK
In 2024, we partnered with the Epilepsy Research Institute to invest in two future leaders in Dravet Syndrome and epilepsy research co-funding two Joint Fellowship awards with Dr Lisa Clayton and Dr Jenna Carpenter, both based at the Queen Square Institute of Neurology, University College London.
Chan Zuckerberg Initiative – Rare As One Network
We were thrilled to be one of the first international patient organisations to join the Chan Zuckerberg Initiative’s Rare As One (Cycle 3) network.
Dravet Syndrome European Federation (DSEF)
DSUK is a member of the European organisation representing patient and family groups from across Europe. We are committed to collaborating with our sister organisations to improve the lives of those living with Dravet Syndrome, and their families.
Genetic Alliance UK
DSUK is a member of Genetic Alliance UK, the national charity working to improve the lives of patients and families affected by genetic, rare and undiagnosed conditions.
Great Ormond Street Hospital Children’s Charity
Great Ormond Street Hospital is one of the world’s leading children’s hospitals. DSUK has partnered with GOSH Children’s Charity since 2017 to fund pioneering gene therapy projects with the aim of addressing the underlying cause of Dravet Syndrome.
The Neurological Alliance
DSUK is a member of the Neurological Alliance, a coalition of more than 80 organisations working together to transform outcomes for the millions of people in England with a neurological condition.
touchNEUROLOGY
touchNEUROLOGY.com is an independent information resource supporting physicians, clinicians and leading industry professionals in continuously developing their knowledge, effectiveness and productivity, via free-to-access content in multimedia formats.
Rare Epilepsies Together (RET) UK
We’re a proud member of this network of patient support groups and charities representing all those impacted by rare and complex epilepsies across the UK.