by AKU | Feb 18, 2015 | Uncategorized
Our crowdfunding campaign on Indiegogo has been officially launched. We now need your help to hit our $30,000 target before the end of March. In this week’s blog we let you know how you can help, and where your money will go. Our new campaign launched just yesterday,...
by AKU | Feb 11, 2015 | Uncategorized
On Tuesday 17th February we will be launching a new crowdfunding campaign on Indiegogo! In 2013 we raised over $100,000 thanks to your generosity and support. In this week’s blog we explain why it is time for another campaign. In just 6 days time we will be launching...
by AKU | Feb 4, 2015 | Uncategorized
On Friday 30th January the AKU Society team were invited to attend a patient workshop organised by Findacure in London. The focus of the afternoon was on how to identify rare disease patients. Identifying patients is one of the biggest challenges faced by rare...
by AKU | Jan 28, 2015 | Uncategorized
For Welsh patients with rare diseases, accessing treatment is a challenge. The application process can be complicated, and, in the case of our patients, access to full treatment is not always granted. Last week we hosted a lobby event in partnership with Genetic...
by AKU | Jan 21, 2015 | Uncategorized
On Monday, our Chairman, Nick Sireau, attended the Annual General Meeting for Rare Disease UK. Rare Disease UK is a membership group for rare disease charities. AKU Society is a member, which allows us to help guide Rare Disease UK’s work in lobbying the UK Government...
