AKU Blog

  • Research and Science Extravaganza Launches Monday!

    Date: 06-Aug-2014

    Next week we will be launching the research and science expert forum on PatientsLikeMe. Before the week begins, we would like to give you a little more information on the structure of the events. We also have a few more experts to reveal! The research and science expert forum is a chance for.. ...more

  • SONIA 2 – An Update on our Clinical Trial

    Date: 30-Jul-2014

    Our SONIA 2 clinical trial is underway at all our sites across Europe. Conducting such a complex trial across three countries is not easy, but the teams at each centre have been working hard to ensure everything runs smoothly. Today we take a look at how the trial is progressing. Recruitment.. ...more

  • A Research and Science Extravaganza

    Date: 23-Jul-2014

    In November 2013 our Welsh AKU patients were allowed to visit the National Alkaptonuria Centre (NAC) for the first time. However, we have recently discovered they may not be able to come back for their follow up visits. This has got us thinking about the true value of the NAC to patients. This w.. ...more

  • The Value of the NAC

    Date: 16-Jul-2014

    In November 2013 our Welsh AKU patients were allowed to visit the National Alkaptonuria Centre (NAC) for the first time. However, we have recently discovered they may not be able to come back for their follow up visits. This has got us thinking about the true value of the NAC to patients. This w.. ...more




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Stand Up To AKU Comedy Night - Liverpool 2019
20-Jun-2019

Our ‘Stand Up to AKU’ comedy night was on Sunday the 9th of June at the Hot Wate.. ...more

RCN Congress May 2019
14-Jun-2019

The Royal College of Nursing (https://www.rcn.org.uk/) (RCN) Congress is the biggest event o.. ...more

AKU Society Brazil - Flavia at the NIH
07-Jun-2019

Today’s blog is written by the head of the Brazilian AKU Society (https://www.akubrasi.. ...more

RE(ACT) Congress America 2019 - Toronto
24-May-2019

This week's blog is written by AKU Society CEO Nick Sireau. Rare disease research has grown .. ...more

Donating to us via Facebook
03-May-2019

Exciting news, the AKU Society now accepts Facebook Donations. With 1.8 billion people o.. ...more