AKU Blog

  • Our Fourth Patient Workshop

    Date: 03-Dec-2014

    Our Fourth Patient Workshop took place on Saturday, at Goodison Park, the home of Everton Football Club in Liverpool. It was a great venue, and the workshop was well attended. This week we talk about what we learnt from the day, and how it went. The day began at 10am in the conference rooms .. ...more

  • Speaking at the World Orphan Drug Congress – A Patient’s Perspective

    Date: 26-Nov-2014

    Two weeks ago Duncan Batty went to speak at the World Orphan Drug Conference in Belgium. Duncan is a volunteer for us here at the AKU Society, and is himself an AKU patient. In this week’s blog he gives us an insight in to the conference, and what it was like giving a patient perspective. .. ...more

  • Black Bone Disease Day in Memory of Robert Gregory

    Date: 25-Nov-2014

    Yesterday was Robert Gregory’s Memorial service in Liverpool. It was a moving event, and Bob would have been proud. In this special blog for Black Bone Disease Day we remember Bob, and all the fantastic work he did throughout his life. Our CEO and Chairman, Nick Sireau, attended the event,.. ...more

  • Meet Eve- Our New Admin Assistant

    Date: 18-Nov-2014

    This week we meet Eve Whitley, our new Admin Assistant. Eve started just this week, and will be helping Lesley and the rest of the team to support all of our patients. This is your chance to get to know her a bit better. What were you doing before you joined the AKU Society? I wa.. ...more




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Meet Maria - AKU Society Student Placement
23-Aug-2019

Hi! My name is Maria and I am currently a 2nd-year student at Royal Holloway University of L.. ...more

DevelopAKUre - A History
02-Aug-2019

Today's blog is written by Nick Sireau the Chair and CEO of the AKU Society, It was in.. ...more

SONIA 2 and DevelopAKUre - Results
23-Jul-2019

We are delighted to announce that all the data from the SONIA 2 clin.. ...more

Sociological Study on Treatment for AKU in the UK
19-Jul-2019

My name is Alev Sen. I’m the main researcher on a study of treatment for AKU in UK hea.. ...more

Other Ways to Give to the AKU Society
04-Jul-2019

In this week’s blog, we explain how you can donate to the AKU Society through mobile g.. ...more