Donations of every size help the AKU Society to continue its support of AKU Patients, whilst researching for a cure.

In the last financial year, we had an expenditure of £246,952.

£214,425 went on our research and support, working towards our ultimate goal of curing AKU and helping those who are affected by AKU.

Thank you to everyone who has donated, past and present. Without such generosity we wouldn’t be able to continue our work.


Simon’s Testimony

“Before the AKU society, I found it hard to get the right diagnosis and treatment for the excruciating pain that I was experiencing at the time. Each of my many symptoms were treated separately and, because of my young age, often mistaken for various other conditions. Without the AKU Society and the NAC, I would still be struggling to get help and treatment and I personally owe them my gratitude.”

Transforming the lives of AKU patients; through patient support, community building and medical research”


Patient Support

The funds donated goes towards helping patients with ongoing support during their NAC visits. Patients receive a full health assessment of AKU, access to the drug nitisinone and advice on living with and managing the disease.


Community Building

We use our funds to build communities between our AKU patients. We hold international and UK patient workshops to give our patients the opportunity to get to know each other and share their experiences with living with AKU. We have online communities as well for patients that cannot attend these workshops, these give them the chance to talk to other patients and get advice on how to manage AKU. We have a partnership with Breaking Down Barriers, where we have developed an inclusive community for those families and individuals affected by AKU.


Medical Research

Our medical research is key in leading our patients towards a cure for AKU. We are constantly running medical research surrounding AKU. Through our European wide clinical trials, called DevelopAKUre we have the first potential treatment for AKU, a drug called nitisinone. We aim to research how to combat the side effect of this drug, to study children and see when they can take this drug and finally gene therapy, which will lead us towards a cure for AKU.