The AKU Society, a UK-based charity, has launched a crowdfunding campaign to raise funds for “Leave No Patient Behind – A Global Black Bone Disease Registry” in order to gather information about alkaptonuria (AKU) patients around the world in one single place. Alkaptonuria, also known as AKU or Black Bone Disease, is an extremely rare genetic condition, which can cause significant damage to the bones, cartilage and tissues of those affected.
The funds raised will allow the AKU Society to make the case for access to the life-changing drug nitisinone in the many countries where it is not yet available. It will also help prepare plans for gene therapy and other new treatment studies.
More information and donation link: https://chuffed.org/project/theakusociety