by AKU | Nov 6, 2014 | Uncategorized
For our patients who are on the drug nitisinone, keeping to a low protein diet is very important. In this week’s blog we introduce you to a helpful website, where you can find a great low protein seasonal treat to make at home! Adapting to Low Protein Evidence so far...
by AKU | Oct 28, 2014 | Uncategorized
Our AKU Workshop in Stockholm brought together a great range of people, from researchers to patients, to staff from the National Alkaptonuria Centre (NAC) in Liverpool. Alistair has been Coordinator at the NAC since March, and this was his first international...
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 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...
