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More than 110 years since the discovery of alkaptonuria (AKU), 13 European organisations have been recognised for their global research collaboration into the world’s first treatment for alkaptonuria (AKU) by winning an international award.
Professor Jim Gallagher, from the University of Liverpool’s Institute of Ageing and Chronic Disease, will accept the 2013 RARE Champions of Hope Collaborations in Science Award on behalf of DevelopAKUre from the Global Genes Project, a worldwide non-profit patient organisation, for their ground-breaking research.
The DevelopAKUre collaboration was chosen from over 200 nominations, winning one of only five awards that recognise individuals and collaborations for their contributions to patient advocacy, scientific research and medical care.
DevelopAKUre, which is funded by a grant from the EUFP7 Programme and the AKU Society, runs clinical trials on the drug nitisinone and for the first time in the UK, patients are able to play a leading role in clinical research for their disease, providing important patient insights in an area of work typically led by pharmaceutical companies.
Clinical trials will also improve understanding of osteoarthritis, which affects approximately 8 million people in the UK.
Professor Gallagher will receive the award at a gala event in Newport Beach, California in September. He said: “Our consortium is delighted with this RARE Champions of Hope award from Global Genes. International co-operation is vital in fighting rare diseases. In my view, it is an outstanding example of how fundamental research can be translated into patient benefit.”
The award coincides with the end of the first of three clinical trials on nitisinone. If these trials are successful, the AKU Society will work with the other participating organisations with the objective of getting nitisinone authorised as the world’s first treatment for AKU.
Yogesh Rathod, an AKU patient who is taking part in the clinical trials, said: “These trials have given us great hope. This treatment could completely change the lives of myself and many others affected by AKU. With the first trial complete, we’re that one step closer to a cure.”
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