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Robert Gregory suffered from AKU and was one of the original co-founders of the AKU Society. He was diagnosed at the age of 40, following pains in his lower back and, with the benefit of hindsight, was able to trace his symptoms back to his teens.
When AKU began to dramatically damage Robert’s health, he became frustrated by the lack of information available about the condition and, together with his doctor, Dr Lakshminarayan Ranganath, he kick-started the AKU movement.Robert was key to the success of the AKU Society and can be credited with securing funds from Swedish Orphan Biovitrum, a pharmaceutical company that specialises in rare diseases. The money was used to set up the first AKU website. He was a respected member of the AKU Society’s Board of Trustees and spoke at our very own House of Lords event.
A former trade union activist, Robert was forced to retire at the age of 52 due to the debilitating nature of the condition. Once he was diagnosed, Robert had both of his knees and hips replaced and suffered from two strokes. In addition to AKU, he was also diagnosed with Parkinson’s disease.
He sadly died in October 2014.DevelopAKUre is a series of major international clinical trials, run by a consortium of 12 European partners. It aims to study a potential new drug, called nitisinone, and assess its potential effectiveness in treating the rare disease, alkaptonuria (AKU).
DevelopAKUre is co-funded by a grant from the European Commission. This website is run by a UK patient group, the AKU Society. Learn more about AKU on the AKU Society's What is AKU page.
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