Dravet Syndrome UK awarded major funding boost to accelerate research

Dravet Syndrome UK awarded major funding boost to accelerate research

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 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.

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