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.
We're back, with clinical trial news.
Tue 14 Feb 2012 06:34:32 | 0 comments
It's been a couple of months since we've had an update in the AKU Newsfeed and for that we are sorry and will start posting news more frequently again.
However, we have been busy preparing and writing an application to the EU Government for 6 million euros - if it's successful we'll be able to fund a clinical trial in a potential new drug, nitisinone. If you want to know about the drug, have a look at the guide "Taking Nitisinone" written by our patient volunteer, Duncan Batty.
Success in the funding would mean the trial will run at three European site - one in the UK, one in France and one in Slovakia. Being spread over three sites will mean that we can contact enough patients to make the study meaningful. To have a chance of the results meaning anything, we'll need to recruit nearly 200 patients over the three sites.
This is where you can help - if you are a patient and keen to know more about the trials, please get in touch with us; anyone else, please spread the word that we are building up to a trial. At our last conference we launched our plans for a clinical trial and so you can find more information at Campaign for a Phase III trial.
As always, you can send us an e-mail at: oliver@akusociety.org, or nick@akusociety.org.
If you liked the work we are doing here, why don't you donate to help us continue, and
remember to check back regularly for updates.
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