A new study published on World Kidney Day 2024 suggests that finding ways to treat people living with rare kidney diseases could help reduce the overall demand for dialysis and kidney transplants.
The Effects of rare kidney diseases on kidney failure study, published in The Lancet, draws on the UK’s National Registry of Rare Kidney Disease (RaDaR), the largest rare kidney disease database in the world.
The findings revealed that people with rare kidney disease are 28 times more likely to experience kidney failure than those with other causes of chronic kidney disease (CKD).
A condition is usually considered rare if it affects fewer than 1 in 2000 people in the general population. Around 70 in 100,000 people have a rare kidney condition. People with these rare kidney condition make up 5-10% of people with CKD, but account for more than a quarter of those receiving kidney replacement therapy (dialysis or a transplant).
In other words, despite being rare, these diseases contribute to many people needing to receive treatment for kidney failure.
In addition, nearly all children living with kidney failure have a rare kidney disease, and at least 3 in 5 children on kidney replacement therapy have end stage kidney disease due to rare disease.
The study suggests that a focus on finding new ways to treat conditions could mean fewer people requiring dialysis and transplants, leading to better outcomes for individuals and reducing the burden on the NHS.
The RaDaR registry is managed by the UK Kidney Association and was originally funded by a group of organisations: Kidney Care UK, the Medical Research Council, Kidney Research UK, and the PKD Charity.
More information about rare kidney conditions, including patient stories, is available on our Rare kidney conditions information hub.