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...