by AKU | Aug 24, 2016 | Uncategorized
In August, rare disease patient advocacy organisation, Global Genes hosted a webinar supporting rare disease patients to effectively communicate with their healthcare providers. This week’s blog highlights the key messages taken from the webinar. Global Genes,...
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 | Aug 1, 2016 | Uncategorized
On Sunday 2nd October, AKU supporter, Katie will take part in the Cardiff Half Marathon to raise money for AKU. In this week’s blog, Katie shares why she is fundraising for AKU and how she plans to prepare for the big event Hiya, I’m Katie, a 22-year-old...
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...
