Thousands of people living with rare kidney disease will get access to improved diagnostics, treatments and potentially cures, thanks to a huge funding boost from the medical charities LifeArc and Kidney Research UK and led by experts from the University of Liverpool and Alder Hey Children’s NHS Foundation Trust.

Over the next five years, the LifeArc-Kidney Research UK Centre for Rare Kidney Diseases will create a £9.4m ‘UK Kidney Ecosystem’ which will develop new treatments for children and adults.

The Centre will bring together scientists, clinicians, patients, and other stakeholders to work together as one kidney community and will be supported by an additional £1m funding from Kidney Research UK. The Centre will initially focus on children, such as those treated at Alder Hey and other UK children’s kidney centres, to find new treatments to slow the journey to kidney failure. It will later extend its efforts to include adult patients.

A report published by Kidney Research UK last year warned that kidney failure rates are increasing so fast that they could overwhelm the healthcare system within a decade. Urgent action is needed to address this crisis.

In children the majority of kidney failure is due to a rare disease. The Centre will be led by the children’s kidney consultant Dr Louise Oni who works as a Senior Lecturer in Paediatric Nephrology at the University of Liverpool and honorary consultant paediatric nephrologist at Alder Hey Children’s Hospital.

Dr Louise Oni said:  “We are incredibly grateful for the opportunity to establish the Lifearc-Kidney Research UK Centre for Rare Kidney Diseases. This UK wide project will unite all of the systems and gather all of the people to work together. This will create a culture of constant learning to bring faster advances to patients living with rare kidney diseases.”


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