Rare Disease Research UK

The Rare Disease Research UK Network was launched in July 2023 following a £14 million investment from the Medical Research Council (MRC) and the National Institute for Health and Care Research (NIHR). As a UK-wide network, we aim to be able to significantly impact the Rare Disease research landscape and improve the lives of those directly or indirectly affected by Rare Diseases over the next 5 years. The Network is made up of 11 UK-wide research nodes and a coordinating hub. The nodes are based at universities across the UK, and will be responsible for specific research projects. The hub, which is led by Newcastle University in partnership with The Newcastle upon Tyne Hospitals NHS Foundation Trust and Genetic Alliance UK, is responsible for coordination of the Network. Over the next 5 years we are hoping to expand the Network to including patients, policymakers, regulators, industry and charities.