Dravet Syndrome UK has been selected by the Chan Zuckerberg Initiative 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”.
“These organizations 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.”Heidi Bjornson-Pennell, CZI Lead for the Rare As One Network
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.
Notes to editors
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 Initiative and Rare As One Network RFA – Chan Zuckerberg Initiative
Our Research Programme
Funding research is an essential part of our mission to bring hope to families living with Dravet Syndrome and improve their lives.