Kidney disease is a public health emergency costing the UK economy an estimated £7 billion annually. Rare kidney diseases consist of over 150 distinct conditions. Although individually affecting fewer than 1 in 2,000 people, it is estimated that, overall, these rare diseases affect over 160,000 people in the UK. The annual NHS cost for dialysis is approximately £263 million. Kidney Research UK (KRUK) recently commissioned a report, titled ‘Collectively common: the devastating impact of rare kidney diseases in the UK’.
Prof Lee Aiyegbusi (Theme 1, Long-term conditions) was one of the leading UK experts who contributed to and provided insights for this report, which was launched at the KRUK ‘Driving Discoveries’ conference in September 2025. The report outlines issues including significant diagnosis delays, inconsistent care and long waits for new treatments, with children in particular left at greater risk of medical, educational, and economic disruption. It also provides 14 recommendations to enhance diagnosis, clinical trials, and encourage multistakeholder commitment to investment in research and care services.
In November, Lee participated in a parliamentary roundtable hosted by Stuart Andrew MP at Westminster where the report and its recommendations were discussed extensively with members of parliament.
Prof Lee Aiyegbusi, Professor of Patient-Centred Research, University of Birmingham