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Welcome to the AKU Society Newsfeed. This page lists all the current news from the AKU Society. Brief summaries will appear on the homepage, in the "Latest News" box, and full stories appear here. We've got Oliver writing the AKU news, and links to Nick's blog posts on the role of a patient organisation in treating rare diseases.
Sep 19

In the July e-news, we announced a new partnership with a biotech start-up, Protein Technologies to begin work a project to design a protein replacement therapy for AKU. In this month's e-news, we announced another new partnership, with Dr Harbottle’s lab at Imperial College London on a promising gene therapy idea.


We are now delighted to announce that these two groups have begun work together, sharing gene design, HGD enzyme structure and sharing gene vectors. This is great news for us, as it means that the expertise bought by both teams should now mean they can move even quicker into new areas for AKU treatment.


For more information on both groups, please check the links below, and check back on www.alkaptonuria.info for more information on all our AKU research projects.


Protein technologies - www.protein-technologies.com


Dr Harbottle’s lab at Imperial College London - www1.imperial.ac.uk/nhli/molecular/genetherapy

Feb 15
Our partners at the University of Liverpool have confirmed 100 new cases of AKU in Vellore, South India.

The cases were brought to their attention by Dr Issac Jebaraj, who attended our 5th International Workshop on AKU, held in Liverpool last November, and spoke about his work identifying and treating alkaptonuria patients in the Romani community.

For us, this is an exciting story, as it means more AKU patients will be able to access information and support that should help them to better cope with the disease. We're especially pleased that the news story has been picked up by several sites internationally, including those in India (Yahoo! India), Malaysia (Malaysia Sun) and Africa (Africa Leader). We hope that it will lead to more contact with AKU patients and their doctors in countries where there is little knowledge of the disease.

One of the biggest problem in AKU, as all rare diseases, is a lack of awareness. In a few weeks time, it'll be Rare Disease Day (29 February 2012) - so if you want to do your bit to help, have a look at some ideas online: www.RareDiseaseDay.org


A list of all AKU news stories, past and present, is avaialble here: AKU in the news
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