by AKU | Jul 19, 2019 | Uncategorized
My name is Alev Sen. I’m the main researcher on a study of treatment for AKU in UK healthcare. The study is sociological which means it will focus on the way AKU and relevant treatments are understood and approached. It is not a medical research study...
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 | Oct 25, 2018 | Uncategorized
The AKU Society has had a hectic month. In today’s blog, we hear about what each team member has been up to.Our Fundraising Officer, Juliet, and Patient Support Manager, Hannah, were both in Glasgow for the Findacure Showcase on the 10th October. It was at...
by AKU | Aug 15, 2018 | Uncategorized
The newly published results of a study held at the National Alkaptonuria Centre (NAC) show that a drug called nitisinone improves the health of AKU patients. They also show that it reverses a process called ochronosis, where a black pigment is deposited in tissue as a...
by AKU | Jul 25, 2018 | Uncategorized
We have some exciting news. The AKU Society has just been awarded a £60,000 grant from the Childwick Trust. This will fund a research study into children with AKU, called SOFIA-Paediatric (‘Subchondral Ochronotic Features in Alkaptonuria in the...
