Useful Links
There are lots of medical resources available online, but sometimes it is confusing to see which are important or even relevant to you. This page will include links to those sites that we use and trust to give you accurate and reliable information. Check back regularly to see what will be added.
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Rare Disease Communities is an online social network for patients & families to connect with one and other to support and share vital experiences on aspects of living with a rare disease. The Alkaptonuria community is the place to connect with other AKU patients, and find out how they live with the disease.
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As the most common symptom of Alkaptonuria is osteoarthritis, many of our resources were found on www.arthritiscare.org.uk. This is a good site which has a wide variety of free booklets on a range of issues. Some useful ones to look at are:
[following links open a new webpage]
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As there is currently no treatment for AKU, many patients will need to have joint replacement surgery at some point. The decision to have joint replacement surgery is big, and needs to be discussed between the patient, and their doctor. However, we can offer some advice on what to expect.
National Joint Registry - A Department of Health project to supply easy to understand information to patients waiting for joint replacement surgery. Their patient's guide is a good resource to better understand what will happen to you when you need surgery.Another good source of guidance is Arthritis Research UK, who have published online a series of reports detailing the procedures. Please click the following links for more information:
These pages are for information only, and you will need to discuss any surgery options fully with your doctor. If you have any questions about the implications of surgery though, please contact us (oliver@akusociety.org).
You should also reads the NHS pages on joint replacement, at these links:
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Other AKU Societies
We have several sister charities, helping to support patients in other countries, there links are:
ALCAP - helping patients in France
AIMAKU - helping patients in Italy
AKU Society of North Amercia - helping patients in Canada and the USA
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Alkaptonuria Yahoo! Groups
You can also join our own Yahoo Groups which can be found by going to Yahoo.com, looking in the groups and typing ‘alkaptonuria’ or ‘alkaptonuria ochronosis’.
You will find two groups there to join: Alkaptonuria Society and Alkaptonuria Ochronosis.
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Health UK Directory
HealthUKDirectory.com is designed to be a one-stop destination for health-related information.
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If you are concerned about any of these links, or believe you have found an incorrect link, please tell us, at info@akusociety.org. Thanks.