Newcastle University is a founding member of the Russell Group of Research-intensive universities, and a Global Top 110 university (QS World University Rankings 2024), Newcastle University is dedicated to excellence, creativity and innovation, pioneering solutions that can change our world.  Newcastle University has a stellar track record in rare disease research. We have benefited from decades of collaboration between the University and Newcastle Upon Tyne Hospitals NHS Foundation Trust. We have united almost 100 experts from across these organisations to form Newcastle Centre for Rare Disease where the planned research will be undertaken together with the Translational and Clinical Research Institute.

Researcher implicated in the project: Colin Miles

The Ciliopathy Alliance (CA) was formed in 2010 by patient groups, patients, clinicians and scientists with a mission to improve the lives of children and adults affected by ciliopathies. The CA is a UK-registered charity with international membership. In 2012, the CA organized the first CILIA conference, which is now held biennially and is the largest cilia conference worldwide. Ciliopathy patients and patient groups are invited to attend the conference and participate in a dedicated patient involvement/engagement event. The CA will establish a PELSI (patient, ethico-legal and societal issues) Advisory Board with patients, family members and groups representing the renal ciliopathies, as well as contributing to other work packages as required