The Alkaptonuria (AKU) Society
The AKU Society is a patient group and registered UK charity dedicated to people living with AKU, an ultra-rare, degenerative genetic condition also known as black bone disease.
In every one million people, as many as one to four may be affected. Our AKU staff, together with our trustees composed of patients, relatives, scientists and doctors, supports everyone affected by this complex and often misunderstood condition. We also work alongside the National AKU Centre in Liverpool, the only specialist centre of its kind in the world, which provides coordinated care to patients across the UK.
Founded in 2003, we exist to improve the lives of those living with AKU. The condition stops patients’ bodies from breaking down a chemical called homogentisic acid (HGA) which the body naturally produces during the digestion of food. Due to this, HGA builds up in the body and, over time, leads to black and brittle bones and cartilage, and early onset osteoarthritis. The build-up of HGA in the body can also lead to other, sometimes more serious health complications. For many, AKU is not diagnosed until adulthood, often after years of unexplained symptoms and irreversible damage.
Core Activities:
- Raise awareness, improve access to care and provide support for patients & their families.
- Help people understand and manage their condition through close partnerships with healthcare professionals and researchers, and by promoting self-management tools.
- Drive progress toward improved treatment options through research, collaboration, and advocacy.
Contact Us and Stay Connected
We’d love to hear from you! If you have any questions or would like to learn more about our work, feel free to get in touch: info@akusociety.org
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