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...
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...