This page is dedicated to those who have donated to our Crowdfunding campaign to create the First Global Black Bone Disease Registry.
The registry will allow us to collect as much patient information as possible, including contact information and how the disease progresses from AKU patients worldwide. This information will streamline AKU research and how we help patients access nitisinone, a drug that reduces the harmful acid that causes the disease by almost 100%.
Your donation will help us change the way we look for a cure for AKU and how we help patients receive the care they deserve. To read more and help us leave no patient behind, please visit the campaign page and donate.
A huge thank you to everyone who claimed who donated £25 and claimed our perk to be featured on our prestigious Wall of Honour. A £25 donation will assist data discovery and the implementation of data into the registry