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annekat
01-02-2015, 05:34 AM
I just ran across this on Facebook. Vasculitis Patient Advocacy Network - Doctors-United States (http://www.vasculitispan.org/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..

mrtmeo
01-02-2015, 06:36 AM
Nice find!

Pete
01-02-2015, 09:45 AM
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.

annekat
01-02-2015, 09:56 AM
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.

debhaz22
01-02-2015, 12:11 PM
Thanks Anne! Great information :)

annekat
01-02-2015, 12:25 PM
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.

mishb
01-02-2015, 07:15 PM
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

Pete
01-03-2015, 03:24 AM
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.

annekat
01-03-2015, 04:40 AM
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.

mishb
01-03-2015, 07:34 PM
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.

annekat
01-04-2015, 04:50 AM
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!

Aneinu
09-08-2016, 08:53 PM
I just ran across this on Facebook. Vasculitis Patient Advocacy Network - Doctors-United States (http://www.vasculitispan.org/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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annekat
09-09-2016, 12:56 AM
Looks like this page doesn't exist any longer.

Sent from my SM-G920V using Tapatalk 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.

Aneinu
09-09-2016, 09:42 AM
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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luan22
11-30-2017, 06:23 PM
thanks annekat for good infomation

annekat
12-01-2017, 12:48 AM
thanks annekat for good infomationI 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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Pete
12-01-2017, 05:35 AM
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.