Hi there! I haven't posted here in ages, but I have lately been trying to get a local support group started through Meetup.com -- it's a website for managing clubs with different interests. One problem is that they have categories for autoimmune diseases in general and lupus and even fibromyalgia, but nothing for Sj?gren's. Each category Meetup establishes allows people to sign up to show interest, even if there isn't a club in their area yet. Since there is no category for Sj?gren's that makes it that much harder to find Sj?gren's patients in your local area to form a group.
Anyway, it's still possible to start groups there without fitting into one of those categories, but I know from experience with Meetup.com that if enough clubs are formed in a specific topic they will create a category for it. I hope that anyone who wants a support group in their area and is interested in using Meetup.com will both write to Meetup.com's administrators about getting a category and go ahead with starting a group. It is possible to promote a group without a category by contacting people interested in related issues, like fibromyalgia, lupus, autoimmune diseases, etc. You can even partner with the organizers of those groups to cross-promote.
Anyway, I just thought I'd throw that out there in case other people are interested in building support groups. I've found Meetup.com is a great tool and a great way to get people together for face-to-face support. It would just be easier if we could find our condition in a search.
Thanks,
Memory
The Sjogren's Syndrome Foundation also has support groups meeting locally in many areas, and they can get samples from the Foundation plus informative literature and help with getting outside speakers. You may want to look on the SSF website and see if there is already an SSF support group in your area.
Genko