by AKU | Apr 3, 2019 | Uncategorized
Last week, Rare Disease UK launched a report of its recent patient survey, looking at exploring what it is like to live with a rare disease. This week’s blog discusses the many findings that were published in the report. Their report: “The Rare Reality...
by AKU | Apr 3, 2019 | Uncategorized
As many of you will know, we are running the DevelopAKUre clinical trials. These should give us evidence whether nitisinone is effective as a treatment for AKU. This weeks blog explains the third part of our clinical trial, SOFIA. DevelopAKUre is made...
by AKU | Apr 3, 2019 | Uncategorized
Last week the AKU team attended a workshop run by Findacure called ‘Navigating the Highly Specialised Technology Programme’ to improve access to rare disease treatments. This week’s blog talks about the many important messages that were taken from the day. The...
by AKU | Mar 14, 2019 | Uncategorized
Rare Disease Day is an international day designed to raise awareness to the public and those in government about rare conditions and how they affect people across the world. The day falls on the last day of February every year and sees thousands of events...
by AKU | Feb 15, 2019 | Uncategorized
The AKU Society has just come back from a hectic week in the beautiful Italian city of Siena. We were not, however, there to view the incredible renaissance architecture or sample the lovely Tuscan wine, although we did try. Instead, we attended the final project...
