Our history is one of perseverance, dedication and innovation. It demonstrates how rare disease patients and their relatives can be empowered to take control of their condition and actively drive forwards their own healthcare and treatment prospects, in partnership with medical experts.
Founded in 2003 by AKU patient, Bob Gregory, and biochemist, Prof. L. Ranganath,
we were the first AKU Society in the world. At that time there was no effective treatment, specialist advice or support network for AKU patients,
Nick Sireau’s two boys were born with AKU, he was determined to do everything he could to ensure it would not stop them from leading
healthy lives. Joining Bob and Prof. Ranganath, Nick gave up his job, dedicating himself full time to finding a cure for AKU. The AKU Society
formed to research potential treatments, connect AKU patients across the UK, and help patients and their relatives/carers live with the multiple
and severe needs resulting from the disease. They could only dream of what was to happen next.
Nitisinone, a drug being used to treat a similar metabolic
disease, was pinpointed as a promising option for treating AKU. It took 10 years of tireless campaigning, funding research projects, and building
partnerships, before the AKU Society was ready to create the DevelopAKUre consortium and secure a six million Euro donation from the European
Commission to begin a series of major international clinical trials
At the same time, the Department of Health agreed to fund a National Alkaptonuria Centre (NAC) to
be based at Royal Liverpool University Hospital, to provide AKU patients with expert care and advice from leading experts on the disease. NHS
England and NHS Scotland also agreed that English and Scottish patients would be able to receive nitisinone off-label.
Today the scope of the Society’s work also involves providing support for patients in between their visits to the NAC or the clinical trial, in the form of patient visits, specialist workshops, online patient communities and social media updates. Our reach has now spread internationally; we have helped to establish sister societies in 12 locations worldwide, including France, Italy, the Netherlands, Poland, the US, Canada, Slovakia, Jordan, Germany, Sweden, India, and Asia Pacific.
Our work has grown from strength to strength and our services are transforming the lives of AKU patients, now and in the future.
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