How many people have a rare kidney condition?
In this article, we will describe how many people have a rare kidney condition.
What makes a condition rare?
There are different definitions of rare disease. Some experts think a disease is rare if it affects only a certain number of people out of every thousand, while others may consider a condition rare because it’s caused by a specific gene, for example.
It can also depend on where you live in the world, your ethnicity or your age – a disease might be rare in one area or group of people, but more common in others.
In general, though, a condition is usually considered rare if it affects fewer than 1 in 2000 people in the general population.
Some diseases are so unusual they may affect far fewer people than this, though.
There are a lot of rare diseases – over 6000 are known at the moment, and more are being defined all the time. So this means that around 3.5 million people in the UK – 1 in 17 – will be affected by a rare disease at some point in their lives. Many rare conditions are genetic, and often they’re long-term (chronic) conditions.
How many people have a rare kidney condition?
Around 70 in 100,000 people have a rare kidney condition. And approximately 80% of rare diseases are inherited.
Individuals with rare kidney diseases account for 5-10% of people with chronic kidney disease (CKD).
More than 50% of children and those younger than 20 years receiving dialysis (or having a transplant) have a rare kidney disease. Whereas for all adults on dialysis, just over 1o% have end-stage kidney failure due to rare disease.
Some rare kidney diseases do not just affect the kidneys – they also affect other parts of the body, such as cystinosis, which affects vision, and Alport syndrome, which affects hearing.
Rare kidney conditions – how long does it take to make a diagnosis?
On average, it takes four years for a rare disease to be diagnosed. But for some people, it could take much longer.
What’s RaDaR and what are the benefits of joining?
The National Registry of Rare Kidney Diseases – or RaDaR – is an initiative run by the UK Kidney Association.
RaDaR aims to pull together patients’ medical information, including blood and urine results, kidney function and medications, in order to build up knowledge.
By joining, you contribute to that bank of knowledge; and you can be contacted about research studies, which may involve trying new drugs, which may benefit you,
You will also get invited to patient information events. So joining could help others with your condition, and you, or your child. Talk to your doctor if you’re interested.
Summary
We have answered how many people have a rare kidney condition: 70 per 100,00 (i.e. 0.07%). We hope it has been helpful.
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Review article: Wong, 2024
Last Reviewed on 22 May 2024