by AKU | Jan 28, 2015 | Uncategorized
For Welsh patients with rare diseases, accessing treatment is a challenge. The application process can be complicated, and, in the case of our patients, access to full treatment is not always granted. Last week we hosted a lobby event in partnership with Genetic...
by AKU | Jan 14, 2015 | Uncategorized
As most of you will know, we launched clinical trials called DevelopAKUre in 2012. These trials are based in three sites around Europe (Liverpool, UK; Paris, France and Piestany, Slovakia) and will assess the drug nitisinone to test whether it is an effective...
by AKU | Dec 17, 2014 | Uncategorized
In this week’s blog we get in to the festive spirit, and reflect on the great year we have had at the AKU Society. Yesterday in the office we celebrated the festive season as a team. First of all we swapped our secret santa gifts. Everyone was really happy with their...
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...
