Nyc

[ST316]

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]

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]

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

[Pete]

Hi Susan,

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