AKU Blog

  • Findacure Workshop - Managing a Small Rare Disease Patient Group

    Date: 17-Oct-2014

    On 12th September, Findacure held a workshop at the Royal College of Nursing in London on how to manage a small rare diseases patient group. (http://www.findacure.org.uk)Our own CEO and Chairman, Nick Sireau, spoke on his experience managing the AKU Society. In this week’s blog we he.. ...more

  • Katie's Cardiff Half Marathon

    Date: 14-Oct-2014

    On Sunday 5th October Katie ran the Cardiff Half Marathon to raise money for the AKU Society. She decided to do this in support of her Dad, who has AKU. Not only did she beat her fundraising target, she also beat her personal best time in the race! In this week’s blog she tells us all abou.. ...more

  • The British Society of Genetic Medicine Conference 2014

    Date: 08-Oct-2014

    On 22nd-24th September Lesley, our Patient Support Manager, and Alistair, the Coordinator at the National AKU Centre in Liverpool, attended the British Society of Genetic Medicine (BSGM) Conference in Liverpool. This week we look at how the conference went, and examine the importance of attendin.. ...more

  • Farewell from Hana

    Date: 24-Sep-2014

    This Friday will be our Clinical Trial Coordinator, Hana’s last day at the AKU Society. In this week’s blog post, Hana has answered questions from the rest of the team about her time at the AKU Society and her plans for the future. What’s your AKU story? I first heard.. ...more

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AKU Blog

Meet Maria - AKU Society Student Placement

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

DevelopAKUre - A History

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

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

Sociological Study on Treatment for AKU in the UK

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

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