The devastating impact of rare kidney diseases

24 September 2025

People with rare kidney diseases face 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, according to a new report from Kidney Research UK.

An independent report commissioned by Kidney Research UK, Collectively common: the devastating impact of rare kidney diseases in the UK, shows that while rare conditions account for just 5–10% of chronic kidney disease cases in adults, they drive more than a quarter of all dialysis and transplant demand. In children, the impact is severe, with more than 60% of those reaching kidney failure having a rare condition. For children on dialysis, the disruption is relentless, with many missing more than 100 days of school each year – over half the school year.

A disease is classified as rare when it affects fewer than 1 in 2,000 people, but with more than 150 kidney diseases meeting this classification, over 160,000 people in the UK are affected by a rare form.

Now, Kidney Research UK is calling on government to deliver faster diagnosis, ensure children are included in clinical trials, and commit investment into research and services so families are no longer left behind.

Key findings in the report are alarming

Report shows over 160,000 rare kidney disease patients face diagnosis delays and significant gaps in care.

Children with rare kidney diseases can wait more than a decade longer than adults to access new treatments, and those on dialysis are on average missing more than half the school year, every year.

Rare kidney diseases cost the NHS £263m annually in dialysis alone – yet families remain overlooked in health policy.

View the full report

Rare kidney disease dominates life

For 15-year-old Morven from Scotland who lives with the rare inherited condition cystinosis, treatment dominates every day. They must take medication every six hours, including through the night and at school. The drugs slow disease progression but cause unpleasant side effects, from nausea to a strong odour that leaves them embarrassed around friends.

Morven’s mum, Alex, said: “Hospital visits, sleepless nights, constant worry – it dominates our family life. We’re grateful Morven hasn’t needed dialysis yet, but it feels like it’s always hanging over us.”

The report also found children are often excluded from clinical trials and may wait more than a decade longer than adults to benefit from new treatments. Overall, patients do not have timely access to the latest innovations as the UK misses out on vital research and development investment.

The impact doesn't stop

These impacts carry into adulthood. When she was 13, Kathryn Croker from Kettering was diagnosed with IgA vasculitis. Within five months her kidneys had failed, and she began a gruelling dialysis regime, missing more than a year of school. “I lost touch with friends and felt completely isolated,” she remembers. “What’s most shocking is that children today are still going through what I did more than 20 years ago – nothing has really changed.”

Now in her thirties, Kathryn lives with long-term fatigue and reduced working hours despite having a transplant after her father donated one of his kidneys. Her experience reflects the challenges faced by many rare kidney disease patients, as the report highlights; people with a rare kidney disease have a 64 per cent chance of being out of work by the time they reach kidney failure.

Report recommendations

Essential dialysis treatment is the key driver of the economic impact of all forms of kidney disease, with the treatment costing the NHS £34,000 per year per patient in 2023. Dialysis for people living with rare kidney diseases costs the NHS approximately £263 million a year.

Collectively Common sets out 15 recommendations across diagnostics, service design, research and access to innovation, aimed at addressing the gaps in care for people with rare kidney diseases.

Sandra Currie OBE, chief executive of Kidney Research UK, said: “Many children with a rare and hereditary kidney disease are growing up with treatments that haven’t changed in decades, and face a future where adults are being failed by a system already at breaking point."

“This report provides the first real insight into the significant impact of rare kidney diseases and, importantly, lays out a clear path for action. We need faster and more accurate diagnoses, smoother transitions between child and adult services, and better inclusion of children in clinical trials so they are no longer last in line for innovation. Expanding national registries – secure databases that record who has a condition and track their treatment – will also be key to identifying patients earlier and connecting families with research. With the right investment and policy changes, we can give these children – and adults - better futures.”

In 2023, a report from Kidney Research UK found kidney disease had already become a public health emergency, affecting more than 7 million people – 10% of the population - and is costing the economy over £7 billion each year. By 2033, demand for essential dialysis treatment is predicted to grow to such an extent that NHS capacity will need to grow by 400% just to meet critical demand. Despite these findings, kidney disease was omitted from the government’s 10 Year Health Plan released in July, leaving patients overlooked and ignored.