by AKU | Apr 1, 2015 | Uncategorized
Today is the final day of our Indiegogo campaign! You still have time to donate, so keep spreading the word to make the last day a success. Read how the campaign has been going, and hear from Jess, the mother of four year old Daniel, who has Black Bone Disease....
by AKU | Mar 25, 2015 | Uncategorized
At the start of March, Eve and Hannah attended an event run by the Patient Information Forum (PiF) in Manchester. The event focused on evaluating and measuring the impact of health information. In this week’s blog Eve outlines the day, and its benefits to the...
by AKU | Mar 18, 2015 | Uncategorized
On Saturday 7th March Hannah, Eve and Nick attended the 1st Annual Genetic Disorders Leadership Symposium in London. The goal of the symposium was to bring together leaders of UK based genetic disorder charities and other patient advocates to learn from...
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,...
