by AKU | Nov 11, 2014 | Uncategorized
Eurordis has recently launched a campaign and petition to make 2019 the official European Year for Rare Diseases. Sorsha joined their webinar to find out more about the campaign. In this week’s blog she talks about what she learned, and why it is valuable for rare...
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...
