Area of work: Ethical Legal Social Issues
Address: 66 Devonshire Road, Cambridge, CB1 2BL, United Kingdom
Role in RD-Connect:
AKU Society has a role on the RD-Connect Patient Advisory Council (PAC).
The AKU Society is an UK-based, entrepreneurial patient organisation, supporting those diagnosed with alkaptonuria (AKU). AKU is also known as black bone disease. The AKU Society supports patients through providing accurate, up-to-date information on AKU, build online communities to better connect patients, and fund medical research to understand and treat the disease. Patients in the UK can access treatment through the National AKU Centre, and patients in Europe can access research through the DevelopAKUre clinical trials.