The AKU Society is a patient group that helps people with AKU, a rare genetic disease, and funds research to find a cure. AKU (short for Alkaptonuria) was the first metabolic disease ever discovered, in 1901 in London. It is also known as Black Bone Disease because bones and cartilage go black and brittle. It causes an extreme form of osteoarthritis, as well as problems with the heart, the eyes, ears, kidneys and other parts of the body. There is currently no cure.

The AKU Society works in close partnership with the Royal Liverpool University Hospital/University of Liverpool to find a cure. We are at the centre of an international consortium called DevelopAKUre linking research centres across Europe. This consortium is running a clinical trial to test a promising treatment called nitisinone.

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AKU Society

Nick Sireau

This department manages the organizational governance structure and oversees strategic decision-making processes.

AKU Society

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AKU Society

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Governance and Oversight

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