by AKU | Sep 7, 2016 | Uncategorized
his week is Remember a Charity in Your Will Week, an annual awareness week designed to encourage more people to consider leaving a gift to charity when writing a will. This week’s blog highlights the importance of will writing, encouraging our supporters to take...
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 10, 2016 | Uncategorized
This week is Lydia’s last week at the AKU Society. We are sad to see her go and want to thank her for all she has achieved for AKU patients. In this week’s blog, Lydia shares her highlights, what she has learnt and her plans for the future. It has been a...
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...
