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Gwenllian
05-20-2008, 04:00 AM
Hi!

I think it would be great to have a meet up, and actually meet other people with Wegeners!

Is anyone else up for it, and if so, where and when? :)

andrew
05-20-2008, 05:52 AM
Canberra, Australia. Any time you like :D :D

Seriously though, I've never, ever met another Weggie face to face. I've spoken to someone on the phone that has WG but that's as close as it gets. I think it would be wonderful to actually meet someone that has the same thing.

Perhaps some day when we have zillions of members we could all have a conference somewhere. Until then, keep an eye out for someone in your area and perhaps arrange to meet up for coffee and pills :D

Marcy
08-05-2008, 03:28 AM
I'm new to this group but am wondering if any of you have heard of the vasculitis foundation? They have an annual conference every year, to my knowledge it's always in the U.S.. However, people travel from all over to attend. The leading docs in the field are usually present giving talks etc. Hundreds of people with WG attend. I myself have never gone, but would love to.
Marcy

jola57
08-05-2008, 03:42 AM
I believe that there just was one this summer.

Terri
09-27-2008, 11:08 AM
If any of you get a chance......check out Front Page | Vasculitis Foundation (http://www.vasculitisfoundation.org)
This week was Vasculitis Awareness week. I submitted an article to my local newspaper as I did last year.
It makes you feel better just to let people know about these diseases that seldom get talked about.
If you join the vasculitis foundation you also get newsletters. I read them from cover to cover, over and over. It contains info that we all need to read and offers so much help. There is no excuse to suffer mentally if you just reach out.
Call me if you are ever in Pennsyvania, U.S.A. I would love to meet with other "Weggie's" We are special people with special needs.

mama2005
10-24-2011, 01:00 AM
Hey Marcy I am not sure if you were one looking to meet up with another weggie but I do know that in your area there is a 24year old who has started a tour for vasculitis. she plays her violin and talks about vasculitis to bring awarness. she is a great girl she played in my home town two weeks ago.

Trudy
10-24-2011, 01:46 AM
Vasculitis Foundation Announces 2012 Symposia Locations
Chicago, Illinois
Saturday, April 21, 2012
Atlanta, Georgia
Date to be announced

With some advanced planning some of us could actually meet up at one of these Symposiums. I am surprised as Chicago does not have a vasculitis center that i know of.

Anyone one good at organizing?

DEE
10-24-2011, 05:27 AM
[QUOTE=andrew;28]Canberra, Australia. Any time you like :D :D

Seriously though, I've never, ever met another Weggie face to face

.
My hubby and I went to the Yorkshire Support group .UK two weeks ago .There was fourteen people with WG. !!!
There was a talk by a consultant ,q and a session. But best of all people who knew what I was talking about. I was also given local telephone numbers ,incase I needed to talk .
It was suppose to be a short session just to get to know people, five hours later we left.
I would recommend to anyone ,I was alittle afraid about going at first but will defiantely be going to the spring meeting.
My own consultant would like to look into starting a support group.May be one day .

Psyborg
10-24-2011, 09:18 AM
Vasculitis Foundation Announces 2012 Symposia Locations
Chicago, Illinois
Saturday, April 21, 2012
Atlanta, Georgia
Date to be announced

With some advanced planning some of us could actually meet up at one of these Symposiums. I am surprised as Chicago does not have a vasculitis center that i know of.

Anyone one good at organizing?

I'm guessing they picked it for a fairly central location. That's in my next batch of PTO I might be able to make it lol

elephant
10-24-2011, 11:31 AM
Funny thing is grew up in Chicago by live in SC, so I am closer to Alanta, Georgia. I think I will wait to go then.

Al
10-29-2011, 04:31 PM
Personally, I would love to meet up with fellow sufferers, for the perverse pleasure of sitting in the peanut gallery at a vasculitis conference and hecking the learned professionals!

Al

delorisdoe
10-29-2011, 10:28 PM
I would not know what to do with a fellow wegeners patient.

drz
11-01-2011, 07:41 AM
I would not know what to do with a fellow wegeners patient.

Most of them seem like regular people so I think you would do well when it happens. :wink1:

Al
11-01-2011, 09:36 AM
Most of them seem like regular people so I think you would do well when it happens. :wink1:

We are all regular people. Well, as regular (or as irregular) as we would be without our ailments! It's just that we have all felt the noose on our necks, so the conversations may be a little different, and tending to get past the small talk quickly....

Al