by AKU | Oct 22, 2014 | Uncategorized
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...
by AKU | Oct 17, 2014 | Uncategorized
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. Our own CEO and Chairman, Nick Sireau, spoke on his experience managing the AKU Society. In this week’s blog we hear about some...
by AKU | Oct 14, 2014 | Uncategorized
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...
by AKU | Oct 10, 2014 | Uncategorized
On 22nd-24th September Hannah, 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...
by AKU | Sep 25, 2014 | Uncategorized
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...
