Alkaptonuria (AKU) community

Alkaptonuria (AKU) is a rare autosomal recessive disease, affecting tyrosine metabolism. Patients accumulate homogentisic acid at 2000 times the normal rate, resulting in cartilage degradation and symptoms similar to early-onset osteoarthritis.

Campaign launched to find a cure for rare disease linked to osteoarthritis by Oliver published about 1 month ago


Liverpool, UK, 18 November 2011 - A campaigning patient group has today launched a five million-pound appeal to fund a ground-breaking clinical trial to test the drug nitisinone as a potential treatment for alkaptonuria (AKU), commonly known as black bone disease.
Although a rare disease, medical researchers at the AKU Society believe an effective treatment for the condition could also open new lines of inquiry into treating the millions of patients in the UK who suffer from osteoarthritis.

“Anything we can do to understand A...

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My Life with AKU by postalbutterfly99 published about 1 month ago

My Name is Janet and I’m from the United States. Have you ever heard the saying, "Enjoy Life because in a blink of an eye it can all change". In February of 1996, that is exactly what happened to me. I went in for a simple outpatient procedure on my knee and when I came out of recovery, I was told that something was not right but they were unsure of what was wrong. The doctor explaine...

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5th International Workshop on AKU by AKU Society UK published 6 months ago


The 5th International Workshop on AKU will be held at the Liverpool Medical Institution on 18-19 November 2011.
The AKU Society UK is planning  a two day event, with an in depth science day on the 18th, and a patient information day on the 19th. Check out the flyer and contact booking@akusociety.org to find out more and register your place.



Science Day – Friday ...

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Personal Experience with Taking Nitisinone by AKU Society UK published 6 months ago


The AKU Society have been collecting stories from other AKU patients on Nitisinone - some are taking it off-label, whereas others were given it as a part of a clinical trial to see if it is an effective treatment. This is one of those stories, to read more, download them here. We still need to know more about Nitisinone, so if there are any patients who are taking it regularly, please contact us to discuss your experiences.
"I’m in my late forties and I’m one of the few people who have been taking Nitisinone off l...

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