Last week, we announced that we are creating the first open, global registry for alkaptonuria (AKU), in collaboration with the AKU Society. You may not have heard of this extremely rare disease – which causes a severe, early-onset form of osteoarthritis – but it plays an important role in the history of genetic diseases. In… Continue reading A Brief History of AKU, the First Genetic Disease Discovered
Tag: first genetic disease discovered
PatientsLikeMe and AKU Society to Develop World’s First Open Registry for Alkaptonuria Patients
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… Continue reading PatientsLikeMe and AKU Society to Develop World’s First Open Registry for Alkaptonuria Patients