• AKU (Alkaptonuria Society)

    Tel: 07586 759028

    Disabled Access: Yes

    Email: info@akusociety.org

    Website: http://akusociety.org/

    Summary

    Alkaptonuria, also known as AKU or Black Bone Disease, is an extremely rare genetic condition, which can cause significant damage to the bones, cartilage and tissues of those affected. Living with AKU can be challenging, with loss of mobility and pain affecting patients’ physical and mental health. 

    The AKU Society work to:

    - Provide reliable, up-to-date information about AKU

    - Run annual patient workshops

    - Offer individual home support visits

    - Provide ongoing support at the National AKU Centre (NAC) and for DevelopAKUre patients

    For more information, please click the following links:

    - What is AKU?

    - Treatments

    - Support

    - For Professionals

    - Research

    For more information, contact by telephone, email or visit the website.

    Last Updated: 21 April 2026 15:20 by NHS 111 Wales

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    Service does: Advice & Advocacy
    Service does: Illnesses & Conditions
    Service does: Information, Advice & Assistance
    Service does: National Service

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Send: From NHS 111 Wales: AKU (Alkaptonuria Society) - Tel: 07586759028, Website: akusociety.org/