by AKU | Apr 15, 2015 | Uncategorized
In today’s blog we simply want to say a huge thank you to everyone who donated to our crowdfunding campaign on Indiegogo. Thanks to your incredible contributions we smashed our target, and can now support patients to take part in our latest research. When...
by AKU | Apr 8, 2015 | Uncategorized
On Thursday last week, we attended the launch event for the Cambridge Rare Disease Network at the Judge Business School in Cambridge. Our very own Nick Sireau spoke at the launch, as did several of the network’s other founding members. The Cambridge Rare Disease...
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...
