Patients with alkaptonuria (AKU) often struggle to get a diagnosis
due to lack of awareness. Many of our patients are misdiagnosed multiple times and have to wait years before they finally get a correct diagnosis.
This can be very stressful and upsetting for patients and as they get older, symptoms tend to be more severe and difficult to manage. There
may be many more patients out there who are still waiting for a diagnosis.
This is why we have partnered up with the Royal College of General Practitioners (RCGP) to develop an online learning module all about AKU. The module is aimed at GPs and healthcare professionals to increase awareness of AKU and ultimately improve diagnosis.
Anyone can access the module to learn more about AKU. All you have to do is create a free account with RCGP and you can access the module here. GPs get CDP credits for taking the module and nurses can put it towards their continued professional development as part of their revalidation.
In the video below, AKU patients, Ann and Rosie and GP, Ian share their AKU journeys and explain why it is so important to diagnose AKU early:
My name is Alev Sen. I’m the main researcher on a study of treatment for AKU in UK hea.. ...more
In this week’s blog, we explain how you can donate to the AKU Society through mobile g.. ...more
Our ‘Stand Up to AKU’ comedy night was on Sunday the 9th of June at the Hot Wate.. ...more
The Royal College of Nursing (https://www.rcn.org.uk/) (RCN) Congress is the biggest event o.. ...more