Links & Resources

AKU Society UK

For more detailed information about AKU and ongoing research and clinical trials, please visit our sister website in the UK:  https://akusociety.org/

UpScriptHealth

Telehealth support is now available for AKU patients in the US 

If you’re an adult (18+) in the US who has been diagnosed with alkaptonuria (AKU) but are not getting the support you need, you can now connect with a licensed AKU-trained healthcare provider online through UpScriptHealth*. Through a virtual consultation, the provider can assess your needs and discuss what support and treatment may be appropriate. 

*The telehealth service is provided by independent licensed healthcare providers through UpScriptHealth. Cycle Pharmaceuticals supports this program but does not provide medical care, and all treatment decisions are made independently between patients and their healthcare providers. Additional fees may be required. 

Rare Disease Communities

Rare Disease Communities (http://www.rarediseasecommunities.org/en/community/alkaptonuria-aku) 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).

Worldwide Map

Below is a Google map of AKU patients worldwide.

View AKU Worldwide in a larger map