We’re delighted to announce a meeting to discuss Alkaptonuria on 29 June 2011 in Cardiff. It will be chaired by Prof James Leonard, Emeritus Professor of Metabolic Disease at the Institute of Child Health in London. This meeting will be held immediately before the Annual Symposium of the British Inherited Metabolic Disease Group (BIMDG), and will be jointly sponsored by Swedish Orphan Biovitrum Ltd and the AKU Society.
The meeting will be a scientific one, with an introduction from our research team in Liverpool on the biochemistry and pathophysiology of AKU, a report from the NIH on a clinical study of AKU patients, and a clinical view from our Medical Director, Dr Ranganath.
The meeting is aimed mainly at clinicians with an interest in metabolic disease, as well as the wider AKU community of doctors and patients. If you would like more information, or wish to book a place, please contact us at firstname.lastname@example.org.
The agenda for the meeting is below:
16:30 Registration Starts
17:00 – 18:00 Buffet
18:00 – 18:05 Chairman’s Introduction – Professor James Leonard
Session 1: Basic Aspects
18:05 – 18:45 Biochemistry, Pathophysiology and animal models, Prof Jim Gallagher (University of Liverpool)
18:45 – 19:05 Patient and Parent View, Dr Nick Sireau (AKU Society)
19:05 – 19:15 Discussion
Session 2: Outcome and Management
19:30 – 20:10 Outcome in the UK, Dr Lakshimarayn Ranganath (Royal Liverpool University Hospital)
20:10 – 20:50 The NIH Study, Dr Wendy Introne (National Institutes of Health, USA)
20:50 – 21:00 Discussion
21:00 Close of symposium
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There are 7,000 rare diseases. AKU is just one of them, although it has a place in the history books for being the first metabolic disease ever identified, in 1901. This blog provides advice, tips and suggestions for the wider rare disease movement based on our experience on AKU. Please read on and don't hesitate to comment.