Cure Black Bone Disease: Time is Running Out

Cure Black Bone Disease: Time is Running Out

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,...
Cure Black Bone Disease: Time is Running Out

A New Indiegogo Campaign

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...
How to Identify Rare Disease Patients

How to Identify Rare Disease Patients

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...