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If there were a competition for the best liver support group in the world, it would undoubtedly be won by the American group PSC-SUPPORT / PSC PARTNERS SEEKING A CURE. The PSC online forum with over 1,100 Members started in 1998. This is a very powerful discussion group. You can subscribe for free on: groups.yahoo.com/group/psc-support
No matter how obscure or difficult your question, you'll receive a constructive answer from the group, which is dominated by some VERY knowledgeable members, their knowledge coming from their own experience and their study of liver disease. Several of these members have a professional scientific background, one is a physician who has PSC and has had a liver transplant. We described previously how their dynamic offspring, PSC Partners Seeking A Cure was born around 18 months ago. They were devastated when one of their young and active members died while awaiting a transplant. From then on, they decided to be far more active in trying to drive PSC research. It's only when we find the cause that we can begin to develop a cure.
Their aims, similar to ours, are:
To raise funds with which to research the causes and cures of PSC.
To raise funds with which to research the causes and cures of PSC.
To promote PSC and organ donor awareness.
To provide education and support to PSC patients and their families.
To provide education and support to PSC patients and their families.
David Rhodes, a key Member, (originally from Yorkshire), and his wife, Judy, have a 21-year-old son with PSC. Together they've produced an outstanding data base on PSC and everything connected with it. It's used by medical professionals and you can use it too to explore the scientific literature at: http://www.psc-literature.org/. In addition David also produces a free on-line Newsletter which you can access from their home page: http://www.pscpartners.org.
The Group is well-connected to the scientific community researching liver disease, and receive support and advice from some leading hepatologists involved in PSC and PBC research. Ricky Safer deals with all the administration and she can be contacted on: pscpartners@yhahoo.com. The Group is involved in a major drive to raise funds for research. They have a Scientific / Medical Advisory Board which has been working on a programme of small, exploratory research grants.
Of particular interest are the national PSC conferences which have so far been organised ~ the Denver meeting in 2005, Pittsburgh in April 2007, and Jacksonville this year.
Ivor
support in the usa