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...
by AKU | Apr 13, 2016 | Uncategorized
Next week our first ever International Patient Workshop will take place in Liverpool. We have had lots of support for our fundraising campaigns, and that has allowed us to offer travel grants so AKU patients from around the world can attend. This week’s blog...
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...
