Recently I was reminded by one of our posters that I have not informed you about the wonderful group of dedicated specialist who came together to pool their knowledge and gather data for research, known as the Australian Scleroderma Interest Group.
In 2005 this group was formed and now has 12 screening centres in each State and Territory in Australia. Since it's inception there are now over 1000 people with scleroderma registered on their database who are monitored yearly. There is a two-fold benefit to those with scleroderma to be part of this programme. One is that you are closely watched and are seen by scleroderma specialists. Secondly by taking part in this programme you are helping with research and for a better outcome for others in the future.
ASIG have now produced a newsletter called "Scleroderma Connections" and to date there have been three issues. This newsletter, was distributed at the ARA conference in 2010. The aim of the newsletter is to keep patients and their families informed of the latest news from ASIG; a profile of screening centres; current studies; and some practical advice from experts on how to manage common problems arising in scleroderma. There is also news from Scleroderma Australia, a patient support organisation.
To view this newsletter and learn more about the Australian Scleroderma Interest Group to to
www.rheumatology.org.au/rheumatologists/asig-public.asp or www.sclerodermaaustralia.com.au
Australian Scleroderma Interest Group
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