by AKU | Mar 30, 2016 | Uncategorized
Last week, Oliver presented the DevelopAKUre project at a meeting for the Dutch Organisation of Biotechnologies Companies (HollandBIO). DevelopAKUre has close links to the Dutch company, PSR, who act as the medical monitors in our clinical trials. This week’s blog...
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...
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 | 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,...
