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 | Jun 1, 2016 | Uncategorized
In the rare disease world, communication is king. Patients must communicate with those around them in order to get support, much needed help and to raise the profile of their disease. For rare disease patient groups, effective communication is just as...
by AKU | Apr 20, 2016 | Uncategorized
Today we are hosting our first ever International Patient Workshop in Liverpool. In honour of this monumental occasion, we are introducing 2 of our international patients who have travelled all the way from Canada and Argentina to attend the workshop. In this week’s...
