The AKU Society

The AKU Society

Charity information

The AKU Society

Transforming the lives of AKU (genetic disease) patients; through patient support, community building and medical research.

Founded 2003

  • Mission statement

    Alkaptonuria (AKU) was the first identified genetic disease, also known as ‘Black Bone Disease’. It causes a build-up of toxic acid in the body that eats away at patients’ bones, cartilage and tissue, turning them black and brittle. This leads to a variety of life-changing disabilities. Patients develop early onset osteoarthritis, which can destroy every joint in the body. One patient describes how 'it feels as if your bones are wrapped in barbed wire'. The immobilising nature of the disease can lead to social isolation, unemployment, and chronic pain. More serious conditions such as heart disease can also form because of the hardening of tissue around the heart. The AKU society works to improve the lives of patients and those who support them, whilst researching for a cure.
    AKU patient Robert Gregory founded the AKU Society in 2003. At the time there was little information about AKU and no cure or licensed treatment. Since then, the charity has offered life-changing support to AKU patients and their families. The Society provides patients with personalised care and home visits. They get the latest information from specialist workshops, our website, social media and online patient communities. The Society has also pioneered a clinical trial looking for an effective treatment for the disease. A drug called nitisinone is promising, drastically lowering the build-up of the harmful acid.

  • Aims

    The AKU Society aims to:

    • Patient support- provide patients with the latest information on the disease. Provide access to our National Center in Liverpool to get world-leading treatment.
    • Community building- so patients can support each other and share information (including with health professionals). To raise awareness of the disease.
    • Medical research- to find a cure.
  • Overview

    Established: November 2003

    Registered Charity Number: 1101052

    Board members: 4

    Full time staff: 5

    Volunteers: 4

    Phone number: 0122 3322897

    Address: 66 Devonshire Road, CB1 2BL

    View charity accounts on the Charity Commission website