The last day of February is the day designated to focus our attention on rare disease. The global prevalence of alkaptonuria is 1 per 100,000 to 250,000. The prevalence of the disease in the United States is 1 case in one million population (1). According to the AKU Society and the DevelopAKUre Consortium, the number of alkaptonuria patients…
Shared by The AKU Society, UK June 2022 marked the 10th anniversary of the Robert Gregory National Alkaptonuria Centre (NAC) offering life-changing support and treatment to AKU patients. First commissioned by NHS Highly Specialised Services in April 2012, the NAC opened its door to patients for the first time in June 2012, and has now…
Handi-Link is a community radio show on CJAM radio focusing on disability issues. Host Cam Wells compares similarities and differences between disabled and able bodied life and talks to those from the disabled community. Listen to this segment where Cam Wells interviews Denise Higgins about being diagnosed with AKU, living with AKU, and treatment &…
Co-founder of the AKU Society and inaugural director of the National AKU Centre, Professor Ranganath, gives a comprehensive overview of the history of AKU.
If you have been diagnosed with AKU anywhere in the world, you can make an important contribution to our research into understanding, treating, and curing the condition. WHAT IS THE AKU PATIENT REGISTRY? The global patient registry is managed by the AKU Society and collects data on the progression and prevalence of AKU across…