by AKU | Apr 5, 2019 | Uncategorized
On Tuesday the 26th of March, our Patient Support Manager, Lesley, 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
This week we meet Eve Whitley, our new Admin Assistant. Eve started just this week, and will be helping Lesley and the rest of the team to support all of our patients. This is your chance to get to know her a bit better. What were you doing before you joined...
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
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 were taken from the day. The...
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...
