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 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 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,...
by AKU | Nov 11, 2015 | Uncategorized
Last week, Oliver attended the project board meeting of ASTERIX. Oliver represents the DevelopAKUre clinical trials on their patient think tank, and in today’s blog explains how the involvement helps the AKU Society. ASTERIX is a European Commission funded...
