A new report from Kidney Research UK has exposed the shocking reality faced by people living with rare kidney diseases in the UK. The independent study, Collectively common: the devastating impact of rare kidney diseases in the UK, reveals that more than 160,000 people are affected, yet many face years of diagnostic delays, inconsistent care, and limited access to new treatments.
The findings highlight a particularly severe impact on children — with over 60% of those reaching kidney failure affected by a rare condition and many missing more than half the school year due to dialysis. Despite representing just 5–10% of chronic kidney disease cases in adults, rare conditions account for over a quarter of all dialysis and transplant demand, costing the NHS £263 million a year in dialysis alone.
Kidney Research UK is now urging the government to act — calling for faster diagnosis, better inclusion of children in clinical trials, and greater investment in research and services to ensure no family is left behind.
Read the report on the Kidney Research UK’s website: https://www.kidneyresearchuk.org/about-us/policy/rare-diseases-report/