An Update on DevelopAKUre

An Update on DevelopAKUre

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...
Another Incredible Year

Another Incredible Year

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...
The Campaign for a Year of Rare Diseases

The Campaign for a Year of Rare Diseases

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...

The Importance of Low Protein: A Seasonal Recipe

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...
Our Eighth AKU Workshop in Memory of Robert Gregory

Our Eighth AKU Workshop in Memory of Robert Gregory

On Thursday 16th October our Eighth International Workshop on AKU was held in Stockholm, Sweden. Just the day before, on Wednesday 15th October, we received the news that Robert Gregory, co-founder of the AKU Society, and himself an AKU patient, had sadly...