AKU Society

The AKU Society was set up in December 2003 to develop a website to provide information and support to Alkaptonuria sufferers. Initially, it included just two members, an AKU patient, Robert Gregory and his doctor, Dr Ranganath. 

However, we soon realised that in order to make a real difference to people with Alkaptonuria, the group had to become more proactive, supporting medical research and developments that could benefit Alkaptonuria sufferers. The society has been very fortunate to have as board members individuals who can really assist us in our new plans. They bring to the charity a wealth of experience in medicine, community politics and voluntary service. The AKU Society aims to raise awareness about Alkaptonuria among patients, their families, the public, and the medical profession, and to fund research to help find a cure to this serious and rare disease. To find out more about our work, have a look at Patient Help.

The AKU Research Team in Liverpool and the AKU Society set up the findAKUre coalition in 2008 in order to drive forward the scientist-patient partnership and work towards treatments for AKU. Since then, it has grown significantly, with scientists, patients and industry from across Europe, North America and the Middle East joining us. We now have participants from the UK, France, Italy, the Netherlands, Spain, Poland, the USA, Canada, Slovakia, Jordan, Germany, Sweden and other countries. Please see the Team to see who we work with and Research to see the kind of work they do. Each year we hold an international workshop to bring together all the leaders in the field of AKU. You can find out more about this by going to Workshops. 

If you're feeling inspired to help us out, have at a look at the volunteering opportunities, or our donation page. Thanks.