by AKU | Aug 17, 2016 | Uncategorized
Over the past month, Ciarán has travelled to London and Leicester to attend meetings held by the Specialised Healthcare Alliance (SHCA). In today’s blog, he explains why he attends these meetings and why the work of the SHCA is so important.The SHCA is an...
by AKU | Aug 3, 2016 | Uncategorized
Last week Eve attended a patient group workshop organised by Genetic Alliance UK, which aimed to understand the patient perspective on important issues affecting rare disease patients in Wales. This week’s blog highlights the key discussions taken from the...
by AKU | Jul 27, 2016 | Uncategorized
When AKU patients attend the National AKU Centre (NAC) they are advised to follow a controlled protein diet, as nitisinone affects their blood tyrosine levels. AKU dietitian, Shirley Judd helps patients change and manage their diet effectively. This week’s...
by AKU | Jun 29, 2016 | Uncategorized
The National AKU Centre (NAC) opened its doors to the first AKU patients back in June 2012. It is now 4 years on and the NAC continues to grow and develop. Our Patient Support Manager, Hannah has been there from the very beginning and remains an integral part of the...
by AKU | Jun 15, 2016 | Uncategorized
Last week our first ever AKU comedy night took place in Cambridge. This week’s blog talks about the big night and how such events are helping us to expand our community fundraising. Last Thursday, the AKU team were busy preparing for our first ever charity comedy...
