by AKU | Feb 9, 2016 | Uncategorized
On 29th February, we celebrated Rare Disease Day – a day designed to raise awareness of rare diseases, encourage service improvements and ensure that patients’ voices are heard. The theme of the day was appropriately named, ‘Patient Voice’, and the AKU team joined...
by AKU | Feb 9, 2016 | Uncategorized
This week’s blog comes from Ciaran McCarron, an MSc student who has led a project for the AKU Society looking at the cost effectiveness of nitisinone (the drug we trial in DevelopAKUre).The project will allow DevelopAKUre to gain an in-depth understanding of the cost...
by AKU | Feb 3, 2016 | Uncategorized
In December, I attended a seminar that bought together medical experts, patients and patient representatives to discuss the difficulties and challenges faced by chronic pain patients. This week’s blog highlights the important discussions and messages that were...
by AKU | Feb 2, 2016 | Uncategorized
Last week I attended a symposium in Brussels on Improving Patient Access to Rare Disease Therapies. By involving all stakeholders and collaborating on a European level, we can ensure that all patients have access to live-saving approved treatments. This...
by AKU | Jan 24, 2016 | Uncategorized
We recently attended an online webinar organised by Findacure and Healx, explaining the concept of drug repurposing. This is something that is very relevant to the AKU Society and our patients, as the drug we are currently trialling as a part of DevelopAKUre,...
