by AKU | Mar 25, 2015 | Uncategorized
At the start of March, Eve and Lesley 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 Lesley, 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...
