black bone disease

Living with hope – An interview on AKU with Alycia and Nate

2 Comments / Patient Experiences, Rare Diseases / By

We’ve had the pleasure of talking with and featuring many PatientsLikeMe members on the blog over the years, but Nate is the youngest by far. He’s just 5 years old and is living with Alkaptonuria (AKU), a rare metabolic disease, sometimes called Black Bone Disease. Recently, we had the chance to chat with his mom, […]

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PatientsLikeMe and AKU Society to Develop World’s First Open Registry for Alkaptonuria Patients

Rare Diseases / By

Online Patient Network to Connect Patients With Rare Disease, Create Valuable Data for Research CAMBRIDGE, Mass. — January 9, 2013 — PatientsLikeMe and the AKU Society are working together to create the first open, global registry for patients with alkaptonuria (AKU), one of the world’s rarest diseases and the first genetic disease discovered. Nicknamed “black

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