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Originally Posted by
mishb
They asked on all of the facebook groups regarding vasculitis support and wegeners etc, for anyone with doctors that are familiar with WG and could put on the list, for referring to newly diagnosed people who enquire on the VPAN site.
They have been working on it for quite a while and have administrators from USA, Canada, UK and even Australia.
That's great to know, Michelle! I guess I had heard of them but had forgotten or something. I became a member.... and there are only 11, so I encourage others to join, not sure what the result of that would be, but it seems there may be a forum on the site for members. It's cool when these grass roots efforts start to go somewhere!
Anne, dx'ed April 2011
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Originally Posted by
annekat
I just ran across this on Facebook.
Vasculitis Patient Advocacy Network - Doctors-United States
It lists docs with experience in vasculitis, including many we haven't heard of in states we didn't know had them. And they are looking for additional names of docs recommended by patients. The top well-known experts are still singled out as being available for free consultations. The site is for patients worldwide and seems like a very good resource not only for info about docs but for vasculitis info in general..
Looks like this page doesn't exist any longer.
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Originally Posted by
Aneinu
Looks like this page doesn't exist any longer.
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There were some conflicts among the administrators or owners of that page... if I remember right, one of them left and stuck with his own original group on Facebook and the others apparently didn't keep that informative site going... Will look on the Facebook groups and see if there are any other lists of doctors available through those.
Anne, dx'ed April 2011
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Originally Posted by
annekat
There were some conflicts among the administrators or owners of that page... if I remember right, one of them left and stuck with his own original group on Facebook and the others apparently didn't keep that informative site going... Will look on the Facebook groups and see if there are any other lists of doctors available through those.
Thank you
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Re: New list of doctors from VPAN
thanks annekat for good infomation
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Re: New list of doctors from VPAN
Originally Posted by
luan22
thanks annekat for good infomation
I haven't looked at the Vasculitis Foundation site for a long time, to see if they have added any new doctors. I have to believe there are good WG docs in various locations that aren't listed there. I think we still need a comprehensive list for people not living near the well known specialists and unable to travel to them.
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Anne, dx'ed April 2011
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Re: New list of doctors from VPAN
Originally Posted by
annekat
I haven't looked at the Vasculitis Foundation site for a long time, to see if they have added any new doctors. I have to believe there are good WG docs in various locations that aren't listed there. I think we still need a comprehensive list for people not living near the well known specialists and unable to travel to them.
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I just looked the other day, and it has been updated fairly recently.
Pete
dx 1/11
"Every day is a good day. Some are better than others." - unknown
"Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD
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