The AKU Society have teamed up with PatientsLikeMe to create a free, online patient community. The community offers a place where those affected by AKU can connect with one another, learn more about their disease, receive support and track their symptoms and experiences. 

The unique platform encourages you to input your symptoms, mood and quality of life. You can then track and compare these over time to help you to better understand and manage AKU. By sharing information and experiences, you are helping the whole AKU community, as this data is used to better understand AKU and contribute to medical research.

AKU patient Rosie Garbutt was one of the first patients to sign up. When speaking about her experience of the AKU community she said:

‘PatientsLikeMe seems amazing. It is really strange seeing so many people with AKU signed up to it. It’s really easy to use and makes contacting others with AKU so fast! Thank you for setting this up.’