AKU Blog

  • Our Eighth AKU Workshop in Memory of Robert Gregory

    Date: 22-Oct-2014

    On Thursday 16th October our Eighth International Workshop on AKU was held in Stockholm, Sweden. Just the day before, on Wednesday 15th October, we received the news that Robert Gregory, co-founder of the AKU Society, and himself an AKU patient, had sadly died. In this week’s blog we take .. ...more

  • 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

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Meet the patient - Simon Laxon

Today’s blog is written by AKU patient Simon Laxon. In it, he writes about .. ...more

Stand Up To AKU 2019!

We are excited to announce that our Stand up to AKU Comedy Night is back! This year we are h.. ...more

Luton Health Awareness Event

On Tuesday the 26th of March, our Patient Support Manager, Lesley, and Fundraising Officer, .. ...more

EURORDIS Winter School 2019

In today's blog, CEO and Chair Nick Sireau tells us about his recent trip to Paris for t.. ...more

Rare Disease Day 2019

Rare Disease Day is an international day designed to raise awareness to the public and those.. ...more