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 | Apr 27, 2016 | Uncategorized
Last week our first International Patient Workshop took place in Liverpool, bringing together the biggest collection of AKU patients ever! In this week’s blog, find out more about the day and the importance of supporting our international patients and their families,...
by AKU | Apr 6, 2016 | Uncategorized
On 23rd March, Genetic Alliance UK launched a new patient charter on access to medicines for rare disease patients in Scotland. This week’s blog highlights the important recommendations generated from the project, where a range of patient organisations gave their...
by AKU | Mar 23, 2016 | Uncategorized
Last week, Cambridge Rare Disease Network (CRDN) organised an event designed to encourage discussion about the potential need for a rare disease home nursing service. This week’s blog talks about the important messages taken from the event. There are over 7,000...
