by AKU | Apr 12, 2019 | Uncategorized
We are excited to announce that our Stand up to AKU Comedy Night is back! This year we are heading back to Liverpool’s legendary Hot Water Comedy Club, where we hosted 2017’s barnstorming night. Pam Ford is back at the wheel and is sure to keep the...
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
This week we meet Eve Whitley, our new Admin Assistant. Eve started just this week, and will be helping Hannah 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...