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ST316
08-22-2016, 10:18 AM
I am new to this elite group and would really like a meetup in NYC if anyone is around town. There doesn't seem to be any support groups in Manhattan at this time.
I have so many topics that I would want to discuss. As much as I love having this forum for support I think a get together would be great.
Keep me posted if anyone is interested.
-Susan

Pete
08-24-2016, 12:19 AM
You may also want to try the Vasculitis Foundation. They have chapters all over the country.

ST316
08-24-2016, 12:34 AM
You may also want to try the Vasculitis Foundation. They have chapters all over the country.
Hi Pete,
Thank you. I did reach out to them and at this time there are no groups specifically for GPA.
They did send me some information regarding the disease. I will attend the next conference that is in the Tri-state area. Not sure when that will be, but, I am not in a rush. This will be hanging around with me for a long time. It was getting over the initial sucker punch that was tough.

I appreciate your input.
Best,
Susan

JeanMarie
08-24-2016, 05:54 AM
Hi Susan, The reach email for the Tri State chapter, listed on the foundation's site was: [email protected]. I think they met in Dr. Lebovics office, but I heard they haven't had a meeting in a while. I would try sending Gail an email. Same thing for the Long Island branch ([email protected]). They are groups for all forms of vasculitis but, at least on Long Island, most members have GPA. A few members of the Long Island branch did met for coffee a few months ago because there was a new person who was still struggling with a diagnosis.

I think what happens with the groups is when newly diagnosed, folks need a lot of help & the groups fill that need. Then most people get better & they get on with their lives & there is less interest in the group. Maybe if you contact Gail, she may know of patients that you could meet. Hope this helps.

ST316
08-24-2016, 06:27 AM
Hi JeanMarie

I will reach out to Gail and see if she has any group meetings set up on the calendar, and or, she will at least have my contact information for future mtgs.

Thank you so much for your response.
-Susan

Gab122
08-24-2016, 09:49 AM
Hi Susan,

I'm a bit far (in NH) and new myself. I think I read somewhere there are national conferences tho. I'd be interested in that. Anyone have info?

Thx,
Gab

Pete
08-24-2016, 11:34 PM
Hi Susan,

You're welcome. The VF chapter meetings I attend seem to be populated mostly with GPA patients.

MaxD
09-02-2016, 01:49 AM
Susan: I live in NJ and see my docs in Manhattan every few months. I expect to see them in Oct and Nov. If meeting a fellow GPA traveler will help allay concerns, send me a PM. I can try to schedule appointments with my docs on days that convenient for you as well.

ST316
09-02-2016, 02:22 PM
Susan: I live in NJ and see my docs in Manhattan every few months. I expect to see them in Oct and Nov. If meeting a fellow GPA traveler will help allay concerns, send me a PM. I can try to schedule appointments with my docs on days that convenient for you as well.
Hi Max That sounds great. I work midtown near Bryant Park, But can go up to Columbus Circle if you'll be going to Dr's up there.
I don't know how to send PM but if you send me one then I can respond to it.
Thnx,
Susan