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.
Liverpool, UK, 18 November 2011 - A campaigning
patient group has today launched a five million-pound appeal to fund a
ground-breaking clinical trial to test the drug nitisinone as a potential
treatment for alkaptonuria (AKU), commonly known as black bone
disease.
Although a rare disease, medical researchers at the AKU Society believe an
effective treatment for the condition could also open new lines
of inquiry into treating the millions of patients in the UK who
suffer from osteoarthritis.
“Anything we can do to understand AKU, which is a severe form of
arthritis, will undoubtedly help us to understand other forms of arthritis
such as osteoarthritis” said Dr Lakshminarayan Ranganath, Medical Director
for the AKU Society. “Osteoarthritis is a highly prevalent disease affecting at
least
We were very happy with the AKU Workshop last week. Over 100 attendees saw 25 speakers talk about the latest work in AKU.
Talks from out basic science teams on the Friday, from across the UK (Universities of Liverpool, Cambridge and Marseilles;
...... [ Read the rest of this story ]We are holding the 5th International Workshop on AKU next week (Friday 18 -
Saturday 19 November 2011). It hopes to be an exciting event detailing the
latest work in AKU.
We're also planning on using it as a launch-pad for our new campaign to
move towards a phase III clinical trial of nitisinone in AKU patients.
We believe nitisinone is the best hope for a treatment of AKU, and a
successful trial will be the evidence we need to ensure every AKU patient can
get access to the drug.
To understand the reasoning behind our support for nitisinone, please
check our campaign page: Campaign for a Phase III clinical trial.
More information about our plans will be given at the Workshop. If you
cannot attend, watch the website for updates durin
...... [ Read the rest of this story ]
Here’s a copy of the blog post I just put on Rare Disease Blogs: I came home
late from London last night. We’d just had a brainstorm with a group of friends
to think about how to build a strong rare disease movement in the UK. As you’ll
see from my previous posts, I’m convinced [...]
An AKU patient and great supporter of the AKU Society, Simon Laxon, has just
had published in the BMJ an article describing his story of living with
alkaptonuria.
...... [ Read the rest of this story ]
"A Patient's Journey" is an occasional series of articles written by
patients, describing the problems of unique diseases. We are grateful to the
editor, Peter Lapsley, for his assistance in getting this published, and
helping to raise awareness of alkaptonuria.
The full text of the the article is copied below (reproduced with
acknowledgement to the BMJ) and also available as a downloadable pdf
at www.bmj.com/content/343/bmj.d5155.full.pdf
A Patient's Journey: Living with alkaptonuria
The AKU Society is a lucky recipient of a Google
Grant.
The Google Grants scheme provides free Google Adwords
advertising to select charitable
organisations, who help the world in areas such as science and technology,
education, global public
health, the environment, youth advocacy, and the arts.
This is a great scheme that now allows us to put adverts to the website,
for free, on Google. So now
if you search for terms such as “alkaptonuria”, “black bone disease” or “garrod”; you should find an
advert with a link to w
...... [ Read the rest of this story ]The AKU Community over at Rare Disease Communities has just released
an update on the latest news. Have a look at the link: What's new at the AKU
Community?
The community is a great way to find other AKU patients from all over the
World, to share your stories and hopefully find some mutual support. We're big
supporters, and keen to get as many AKU patients online as we can. Find the
group at:
My letter to the members follows:
...... [ Read the rest of this story ]Here’s a great blog post by Oliver Timmis, Communications Project Manager at
the AKU Society, about developing a scientific strategy for rare diseases: A
scientific strategy to unite all rare diseases by Oliver Timmis By their
nature, each rare disease only affects a few people. At the AKU Society, for
example, we have identified 80 [...]
Last week, we posted a story about Leona, a German AKU patient who has entered
the World Arthritis Day "Move to Improve" 2011 competition. You
can see the post here: Leona's entry.
We've now just heard that another AKU patient has entered. This time it's
Carolyn, from Canada. She tells her story of hiking in Switzerland, and how she
feels it has helped her to cope with the arthritis of AKU. Read her story here:
Hiking in Switzerland. As with Leona's, you
can vote if you like the story and help Carolyn to win the competition.
We'd like to see as many AKU patients enter as possible. Every entrant
will help to raise the awareness of AKU to more people, so it's worth putting
up your story and photo. You can apply
here
...... [ Read the rest of this story ]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
...... [ Read the rest of this story ]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.