by AKU | Mar 11, 2015 | Uncategorized
Last week, Oliver attended the RD-Connect conference in Palma de Majorca. Oliver is a member of the Patient Advisory Council (PAC), a working group run by Eurordis to provide patient input into the RD-Connect project. This week he writes about the topics covered at...
by AKU | Mar 4, 2015 | Uncategorized
This year the AKU Society Team had a fantastic time celebrating Rare Disease Day at various different events. In this week’s blog we give a summary of these events, and their Rare Disease Day messages. Parliamentary Reception On Wednesday...
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...
