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 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 17, 2016 | Uncategorized
The AKU Society has been doing lots of fundraising to raise money for our first International Patient Workshop due to take place on 20th April. In this week’s blog we introduce some of our Cambridge Half Marathon runners and explain our plans to expand our...
by AKU | Feb 16, 2016 | Uncategorized
The AKU Society’s office is based in the beautiful city of Cambridge, and on 28th February we were lucky enough to have nine brave supporters taking part in the Cambridge Half Marathon for AKU! We are thrilled to announce that in total they raised a huge £2,427, which...
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...
