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 21, 2015 | Uncategorized
On Monday, our Chairman, Nick Sireau, attended the Annual General Meeting for Rare Disease UK. Rare Disease UK is a membership group for rare disease charities. AKU Society is a member, which allows us to help guide Rare Disease UK’s work in lobbying the UK Government...
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 | 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...
