by AKU | Mar 7, 2018 | Uncategorized
On Wednesday February 28th the world marked Rare Disease Day. This annual event was set up by EURORDIS, a European alliance of rare disease patient groups, in 2008, to meet a pressing need. There were lots of days representing sufferers of specific...
by AKU | Feb 21, 2018 | Uncategorized
The AKU Society is thrilled to introduce you to Jamie Rumbelow. Jamie is running the Edinburgh Half Marathon, part of Edinburgh’s annual Marathon Festival, on 27th May to raise money for us.Jamie lives in the beautiful Scottish town of St. Andrews. He is studying for...
by AKU | Feb 14, 2018 | Uncategorized
Dr. Milad Khedr is a doctor at Royal Liverpool and Broadgreen University Hospitals. He is studying the effect of nitisinone on the tyrosine levels of AKU patients. Here, we ask him about his work. 1) What is the purpose of this study? Alkaptonuria (AKU) means that the...
by AKU | Feb 7, 2018 | Uncategorized
To make our website more accessible to visitors with different needs, the AKU Society has installed support software called Browsealoud from a company called Texthelp. This adds speech, reading and translation to our website to help people with...
by AKU | Jan 25, 2018 | Uncategorized
In this week’s blog, we hear about Bob Montague, who went to the National Alkaptonuria Centre (NAC) for the first time this January. Now 70 years old, Bob read law at the London School of Economics, after which he went to work as a solicitor for a major...
