by AKU | May 21, 2021 | Uncategorized
Today’s blog comes from a letter we received as part of our BBC Radio 4 appeal. Along with a very generous donation, Evelyn Cauwood wrote a remarkably interesting account of her father Fred and his experiences with the disease before we had established the National...
by AKU | Apr 16, 2021 | AKU Blog
We are delighted to announce that we have been selected by BBC Radio 4 to produce a charity appeal. The appeals are ways in which charities can broadcast their message and calls for support to a large national audience. What is a BBC Radio 4 charity appeal? Since the...
by AKU | Feb 22, 2021 | Uncategorized
In today’s blog, we look at our recent mini online patient workshop held this February. The workshop was designed to fill the gap left by face-to-face meetings that have not been able to go ahead due to COVID-19 and lockdowns in the UK. Held on Thursday 11th February,...
by AKU | Jul 31, 2020 | Uncategorized
We are trying to diagnose new patients in the UK by asking people with black spots on the white of their eyes to send us photos of the black spots to see if they need a test for AKU. As a lot of you are aware, the pain from AKU gets worse when patients are...
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...
