by AKU | May 3, 2019 | Uncategorized
Exciting news, the AKU Society now accepts Facebook Donations. With 1.8 billion people on Facebook every month, Facebook can be a brilliant place for you to engage with your friends and family and ask them to donate to your AKU fundraiser. In today’s blog,...
by AKU | Apr 18, 2019 | Uncategorized
Today’s blog is written by AKU patient Simon Laxon. In it, he writes about his experience with the disease and how the National Alkaptonuria Centre (NAC) has helped him.Having a rare genetic disorder can be a pretty daunting thing. It can leave a person prone to...
by AKU | Apr 5, 2019 | Uncategorized
On Tuesday the 26th of March, our Patient Support Manager, Hannah, and Fundraising Officer, Juliet, travelled to Luton for the Flying Start and Breaking Down Barriers Health Awareness and Genetics Event. Flying Start and Public Health Luton worked in...
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...
