If you’ve been diagnosed with a rare kidney disease, you might feel like you’re alone. But new research from UCL and the UK Kidney Association shows that your condition matters far more to kidney failure rates than anyone realised. Here’s why this research could reshape how we treat these conditions.
What are rare kidney diseases?
Rare kidney diseases are a group of conditions, each affecting fewer than 1 in 2,000 people. Although individually rare, collectively they’re significant. They account for 5-10% of people with chronic kidney disease (CKD), but represent over a quarter of those receiving dialysis or transplants worldwide.
Conditions included in this group range from inherited disorders to autoimmune diseases that specialists have only recently begun to understand fully.
Read more about chronic kidney disease on our patient info pages.
Why this matters for kidney patients
The UCL study, published in The Lancet, tracked over 27,000 patients with rare kidney diseases using the UK’s National Registry of Rare Kidney Diseases (RaDaR). The key finding: patients with rare kidney diseases are 28 times more likely to experience kidney failure than those with common chronic kidney disease, but are less than half as likely to die before needing treatment.
This tells us that rare kidney diseases progress rapidly and unpredictably. But there’s hope. Patients tend to be younger and healthier overall, which means they often respond better to transplants and can live longer with a functioning donated kidney.
You can read the full original research from The Lancet here: Rare Kidney Diseases and Kidney Failure Research.
As Professor Danny Gale, senior author, said: “This is a call to arms. Treatments for many of these diseases are either available or in development. We now have a golden opportunity to substantially reduce the burden of kidney failure for patients and the NHS.”
What this does – and does not – mean right now
At MRIKPA, we understand that statistics can feel overwhelming. This research doesn’t mean rare kidney disease automatically leads to faster kidney failure for you personally. Each person’s journey is unique. What it does mean is that healthcare providers and pharmaceutical companies are now likely to prioritise developing and approving treatments for rare kidney diseases.
The NHS currently spends £30-40,000 per person annually on dialysis. If treatments can prevent kidney failure in rare disease patients, that not only saves money – it saves quality of life. You avoid the dialysis routine and keep more of your freedom.
If you have a rare kidney condition, the next step is to speak with your renal team about whether new or emerging treatments might apply to your diagnosis.
Explore MRIKPA’s full patient information resources, or find a local park walk to stay active while managing your condition.
Need support? Contact MRIKPA at support@mrikpa.org.uk or call 07745 242 684.
Source: The Lancet / DDW Online, March 2024 – read the original research
This article is provided for general information and awareness purposes only and was believed to be accurate at the time of publishing. It is not intended as medical advice – please always consult your doctor or renal team for guidance on your individual circumstances. Images used are for illustration purposes only and may not be medically or editorially accurate. While we take every care, errors can occur. If you spot an inaccuracy, please let us know at support@mrikpa.org.uk.
