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 ..Read More >
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 ..Read More >
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..Read More >
Do you have any worries about your disease? Are you strugglin..
10 of our lovely supporters will be running the Cambridge Half Ma..
Meet Carolyn, an AKU patient from Canada, who is looking forward ..