A major new initiative to address the urgent challenges posed by rare kidney diseases has officially launched with the opening of the LifeArc–Kidney Research UK Centre for Rare Kidney Diseases. Spearheaded by Dr Louise Oni, Senior Lecturer in Paediatric Nephrology at the University of Liverpool and honorary consultant at Alder Hey Children’s Hospital, the initial focus of the initiative will be on childhood kidney diseases. 

Rare kidney diseases, though individually uncommon, collectively account for over 10% of adult kidney failure cases and nearly all childhood cases, with lifelong implications for patients. A recent report from Kidney Research UK warns that without decisive action, kidney failure could place unsustainable pressure on the UK healthcare system within the next decade.

Backed by a £10.4 million investment, the new centre will bring together researchers, healthcare professionals and patients, working to accelerate discoveries and improve care. It will build on well-established national resources, including the UKKA clinical guidelines, RaDaR, the UK Renal Registry, and the NURTuRE biobank, forming a robust platform for innovation and collaboration.

It will begin a transformation in all of the 13 UK children’s kidney centres to embed a culture of research, linking systems to streamline data, promote trial readiness, and ultimately transform the way rare kidney diseases are understood and treated.

In support of the centre’s goals, Kidney Research UK has pledged an additional £1 million over the next five years, underscoring the organisation’s commitment to tackling this complex and under-recognised group of conditions.

With this launch, the UK takes a bold step forward in uniting its kidney research community to deliver real change for patients living with rare kidney diseases.