PatientsLikeMe




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.’

Click here to join




AKU Twitter

AKU Blog

Cambridge Half Marathon 2019: Meet the Runners
22-Feb-2019

The Cambridge Half Marathon is Next Sunday. On the 3rd March our four runners will tackle the roads .. ...more

Final meeting of DevelopAKUre and the 11th Scientific workshop on AKU – Siena 2019
15-Feb-2019

The AKU Society has just come back from a hectic week in the beautiful Italian city of Siena.. ...more

SONIA 2 - Last patients
22-Jan-2019

On the 18th January, the last SONIA 2 (Suitability of Nitisinone In Alkaptonuria 2) patients.. ...more

Looking forward to 2019
11-Jan-2019

Now we are all settled in after Christmas and the New Year, here at the AKU Society we would like.. ...more

2018 In Review
04-Jan-2019

A Happy New Year from Everyone at the AKU Society. Now that 2018 is well and truly behin.. ...more