Dravet Syndrome UK has been selected by the Chan Zuckerberg Initiative (CZI) to receive $800,000 (approximately £600,000) over five years to accelerate its research programme. The funding grant will enable the charity to appoint a Chief Scientific Officer (CSO) to develop its research network and drive collaboration between families affected by Dravet Syndrome, scientists and clinicians.

Dravet Syndrome UK applied for the funding from the Chan Zuckerberg Initiative which gives 30 worldwide patient-led rare disease organisations the opportunity to join the Rare As One Network and help drive forward research within individual disease areas (the grant can’t be used to fund research directly).

Galia Wilson, Chair and Trustee of Dravet Syndrome UK said: “We are thrilled to receive this grant which will enable us to drive forward our strategy to put patients living with Dravet Syndrome and their families at the heart of research.

“It’s an exciting time for Dravet Syndrome research with new treatments including gene therapies on the horizon, but there are still gaps in understanding and knowledge which have a huge impact on patients and their families.

“We are delighted to be part of the Rare as One Network so we can work together to share knowledge and enable more research which can make a difference to the lives of those affected by this devastating condition”.

Talking about the Rare as One grant recipients from across the world, Heidi Bjornson-Pennell, CZI Lead for the Rare As One Network said: “These organisations engage patients in research and form partnerships with researchers from around the world. They are thinking incredibly broadly and deeply about expanding their work, and we’re excited to bring these leaders together and continue evolving and expanding our efforts alongside them.”

Further information and regular progress updates will be shared about Dravet Syndrome UK’s work with the Rare as One Network in the coming months.

For more information or interviews, please contact: Katherine Raven, Head of Marketing and Communications atKatherine.r@dravet.org.ukor 07979383157

About Rare as One

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 (channelopathies; ciliopathies; or inborn errors of metabolism) to develop shared research priorities and proposals.

For the 2024 award cycle, Dravet Syndrome UK is one of 30 patient organisations around the world to receive a funding grant and has been awarded $800,000 over five years.

Further information is available at:Rare As One Project – Chan Zuckerberg InitiativeandRare As One Network RFA – Chan Zuckerberg Initiative

About Dravet Syndrome:

Dravet Syndrome is a rare, life-limiting and life-long form of epilepsy, occurring in around 1 in every 15,000 births in the UK. As well as severe, treatment-resistant seizures, Dravet Syndrome causes intellectual disability and a spectrum of associated conditions, which may include autism, attention-deficit hyperactivity disorder (ADHD), challenging behaviour, and difficulties with speech, mobility, feeding and sleep. In around 85% of cases, Dravet Syndrome is caused by a mutation in a gene known as SCN1A.

About Dravet Syndrome UK:

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

We do this by:

• Supporting families affected by Dravet Syndrome emotionally, practically, and financially.
• Raising awareness and providing education to families, the medical community, and other professionals
• Funding research focused on the unmet needs of families living with Dravet Syndrome. Since 2011, Dravet Syndrome UK has awarded more than £675,000 to research into Dravet Syndrome and is currently funding a number of studies in collaboration with partners.

DSUK is supported by a world-class Medical Advisory Board, comprising eight leading experts in Dravet Syndrome, and chaired by Professor Helen Cross, President of the ILAE, and Prince of Wales’s Chair of Childhood Epilepsy at UCL-Institute of Child Health, Great Ormond Street Hospital for Children, London. Find out more about our DSUK’s Medical Advisors here.

Visitwww.dravet.org.ukfor more information about Dravet Syndrome and how the charity brings hope to families living with this condition.

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