The AKU Society is a patient-led support group working to improve the lives of those people living with Alkaptonuria (AKU) and those who support them, while researching for a cure. Our mission is to transform the lives of AKU patients through patient support, community building and medical research. AKU is characterised by black urine, black spots in the eyes and ears, and early-onset osteoarthritis. The AKU Society coordinates access to an expert clinic the National AKU Centre which is based at the Royal Liverpool University Hospital.
We were the driving force behind a major research project funded by the European Union. The DevelopAKUre programme was a series of major international clinical trials, run by a consortium of 12 European partners. It aimed to study a promising drug, called nitisinone, and assess its effectiveness in treating AKU. Nitisinone is not licensed for AKU but is being used by patients from England and Scotland off-label at the National Alkaptonuria Centre. Nitisinone has been shown to significantly reduce homogentisic acid the chemical that causes the damage in AKU.