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 | Sep 9, 2014 | Uncategorized
We’re excited to announce our next AKU scientific meeting on Thursday 16 October 2014. The 8th International Workshop on AKU will take place in Stockholm, Sweden at the Hotel Ariadne. We’re kindly being hosted by Sobi, and a meeting of...
by AKU | Jul 23, 2014 | Uncategorized
In November 2013 our Welsh AKU patients were allowed to visit the National Alkaptonuria Centre (NAC) for the first time. However, we have recently discovered they may not be able to come back for their follow up visits. This has got us thinking about the true value of...
