Links & Resources

What is Alkaptonuria (AKU)?

Rare Disease Communities ( is an online social network for patients & families to connect with one and other to support and share vital experiences on aspects of living with a rare disease. Organized into disease specific communities, the platform will also provide links to quality information and involve patient associations in the governance and growth of each community. The project is a joint collaboration between EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders).

A Rare Disease Explained is a YouTube by Denise Higgins. She explains a little about the disease and her experience. Running time is about one minute. (

Publications on AKU:  Click Here!