Over 150 kidney conditions classed as ‘rare’ together affect over 160,000 people in the UK and cause devastating disruptions to the lives of patients, particularly children, according to a new report from Kidney Research UK.
Collectively common: the devastating impact of rare kidney disease in the UK suggests that people suffering from rare kidney diseases such as cystinosis and aHUS face significant delays, inconsistent care and long waiting times for new treatments.
The impact of rare kidney diseases on children is particularly severe, with the report showing that many miss more than 100 days of school every year – over half the school year. Children with rare kidney diseases can also wait more than a decade longer than adults to access new treatments. More than 60% of children with kidney failure have a rare condition.
A condition is usually classed as ‘rare’ if it affects fewer than 1 in 2,000 people in the general population. Rare conditions account for just 5-10% of CKD cases in adults but more than 25% of all dialysis and transplant patients.
The report makes a number of recommendations for action, including the development of targeted screening programmes for people at known risk of rare kidney diseases, and the enhancement of RaDaR, the largest rare kidney disease database in the world. RaDaR was originally funded by a group of organisations including Kidney Care UK and Kidney Research UK.
The report states that the cost to the NHS of dialysis for rare kidney diseases is approximately £263 million per year. A study published last year suggested 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.
Kidney Care UK, the UK’s leading kidney patient support charity, welcomes this report from Kidney Research UK, which aligns with our work to increase awareness of rare kidney diseases and provide high-quality accessible information for those living with them.