by AKU | Dec 10, 2014 | Uncategorized
Last week’s blog looked at our recent Patient Workshop held at Everton Football Club. In today’s blog we find out more about the day, from one of the patient who attended, Simon Laxon, and his Dad. “I attended the 4th AKU Patient Workshop on Saturday 29 November, at...
by AKU | Dec 3, 2014 | Uncategorized
Our Fourth Patient Workshop took place on Saturday, at Goodison Park, the home of Everton Football Club in Liverpool. It was a great venue, and the workshop was well attended. This week we talk about what we learnt from the day, and how it went. The day began at 10am...
by AKU | Nov 26, 2014 | Uncategorized
Two weeks ago Duncan Batty went to speak at the World Orphan Drug Conference in Belgium. Duncan is a volunteer for us here at the AKU Society, and is himself an AKU patient. In this week’s blog he gives us an insight in to the conference, and what it was like giving a...
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...
