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SECOND ANNUAL AKU MEDICAL CONFERENCE NEWS The second annual AKU medical conference and patient-doctors event
took place over Friday and Saturday (21 & 22 November 2008) in
Liverpool. It was a huge success!
On Friday, we had our
international medical conference, at the University of Liverpool, with
45 participants, including our research team in Liverpool, other
interested doctors, academics and students, researchers from Italy, the
US and Spain and representatives of the AKU Societies from the UK and
France.
The event was co-chaired by Dr L Ranganath, of the Royal
Liverpool University Hospital and a trustee of the AKU Society, and
Prof Jim Gallagher, Head of the Department of Human Anatomy and Cell
Biology and advisor to the AKU Society, who announced our new
three-year research project, funded by the Big Lottery Fund.
Dr
Wendy Introne, of the National Institutes of Health in the USA, started
the day with a talk on the latest promising research into Nitisinone as
a treatment for AKU – the final results will be available next summer.
Dr Jose Manuel Fernandez-Canon, from the University of Leon, Spain,
discussed the molecular basis of Alkaptonuria.
Adam Taylor, AKU
PhD research student at the University of Liverpool, presented his
investigation of ochronosis through different models. Dr Annalisa
Santucci, of the University of Siena, Italy, discussed her team's
research into the biochemical analysis of Alkaptonuria and ochronosis
and presented plans to investigate a new potential drug. Dr L Ranganath
presented the results of a post-mortem of an AKU patient. And Dr Sobhan
Vinjamuri, specialist in nuclear medicine, explained how imaging
techniques could be used for research into AKU.
On the Saturday,
the patient-doctors day started with a small talk by me about the
prospects for AKU, the new Big Lottery Fund research scheme we are
starting, and how we hope to use this to influence policy on rare
diseases. Then followed a presentation by Dr Introne on the Nitisinone
research, followed by AKU Society Project Manager Bev Hebden's
presentation of the activities of the new AKU Information Centre.
Jean-Yves
Sireau then presented his company's latest health monitoring software
–available for free for AKU members. Adam Taylor presented his research
and Dr Jeanette Usher explained the genetics behind AKU. AKU Society
patron Lord Kenneth Ward-Atherton ended the day with some closing
remarks on the future of AKU.
We used this two-day event to
launch officially our major AKU research project funded by the Big
Lottery Fund with the first meeting of the Project Board to kick off
the programme. The two-day event was also an excellent opportunity to
discuss the planned research with other doctors, patients and
academics. It's a fantastic project that will hopefully lead to major
changes in the treatment of AKU and in the policy outlook for rare
diseases. It's looking very promising – more soon!
Altogether,
it was an excellent two days. Doctors and researchers had a chance to
discuss the latest findings and plan new research, while patients got
to quiz the specialists about plans for treatment. The world of AKU is
moving fast, with research teams emerging across Europe and the US,
leaving all of us with a strong feeling of hope.
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