Lesley Harrison, our Patient Support Manager, opened the morning. The workshop was, in large part, the result of her efforts. It seemed right that she should start, giving out copies of the AKU Society’s latest leaflets for comment.
Before long, she handed over to representatives of two specialist nutrition companies - Katey (from Nutricia) and Rachael (from Vitaflo). They both spoke briefly about their products, which are available to National Alkaptonuria Centre (NAC) patients on prescription. Patients also got to try them out on the Nutricia and Vitaflo stands!
Talks after the first break came thick and fast. Professor Jim Gallagher, a leading AKU researcher at the University of Liverpool, gave an overview of the research that has been conducted in the last few years. Professor Ranganath, Chief Investigator for the ongoing clinical trials, spoke next. He explained how close we are getting to an effective treatment for AKU. Then, Nick Harrison advertised the online patient care management system Patients Know Best. This is used by the NAC to keep patients in touch with medical professionals.
We would like to thank our sponsors, the Edith Murphy Foundation, Donald Forrester Trust and Breaking Down Barriers for their generosity. Without their support the day could not have gone ahead. A big thank you must also go to everyone who spoke, as well as to all the AKU patients and supporters who made the journey. We look forward to seeing some of you at next year’s international workshop, which is currently being planned!
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