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Thread: New list of doctors from VPAN

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    Default New list of doctors from VPAN

    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..
    Anne, dx'ed April 2011

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    Nice find!

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    My PCP is on this list. I haven't asked him how many weggies/vascies he sees. He is not leading my treatment, but he does work well with Dr Villa Forte.

    When inquiring about a specialist, I would ask how many Weggies/vascies they see.
    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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    Quote Originally Posted by Pete View Post
    My PCP is on this list. I haven't asked him how many weggies/vascies he sees. He is not leading my treatment, but he does work well with Dr Villa Forte.

    When inquiring about a specialist, I would ask how many Weggies/vascies they see.
    Sounds good, and if he works well with your Wegs specialist, that has to be a good thing. I think asking about numbers is a good idea, but some of us may have to take what we can get. I do hear of quite a few docs in the Seattle area who apparently have experience and are well thought of by patients, but who are not on this list yet. I've heard of these both on here and on Facebook groups. So it is up to us who see and have confidence in these docs to add to the iist. So far, I have no one to add. I like my ENT and think he is a good doc, and I think he understands what vasculitis is and how it affects the sinus and ear area, but he doesn't have enough experience with it for me to put him on the list. I think he has seen 4 Weggies at the most, and I don't know about other vasculitis.
    Anne, dx'ed April 2011

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    Thanks Anne! Great information

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    Quote Originally Posted by debhaz22 View Post
    Thanks Anne! Great information
    Yeah, a nice change from looking at the same VF site all the time. Not that there's anything wrong with it. But nice to see some new names of possible docs that may be near where we live.
    Anne, dx'ed April 2011

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    We have just updated the Australian list, so I will need to send that back through to VPAN so they can update the site.

    The site should turn out to be very helpful when it is fully up and running in the next few days
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Quote Originally Posted by Pete View Post
    My PCP is on this list. I haven't asked him how many weggies/vascies he sees. He is not leading my treatment, but he does work well with Dr Villa Forte.

    When inquiring about a specialist, I would ask how many Weggies/vascies they see.
    Looking back through some earlier posts, I think I may be the source of Dr. Draeger's name on this list. I know he sees one weggie (me), but I don't know how many others he sees, if any. While he's a wonderful PCP, I'm not comfortable with putting him on a list of wegs/vasculitis specialists. I e-mailed the website to ask them to remove his name.
    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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    Oh, I don't know, Pete.... if he works well with your WG doc and is tuned in to WG, I'm not so sure it isn't good to have him on the list; after all, he is a PCP, and how many of them are WG specialists, anyway? Still, I honor your decision and intention..... I hadn't really been aware of VPAN until yesterday, and am not entirely sure where they are coming from; need to spend more time on the site. I do think it's good that they are soliciting our suggestions for docs... are they started or run by vascie patients, or something? Guess I should look at the site again and find out more.
    Anne, dx'ed April 2011

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    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.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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