I facilitate a support group which meets once a month in New Brunswick NJ. It is open to anyone with a rare condition but people suffering from rare connective tissue disorders frequent the meetings most.
Maybe I'll make the trip some time RedOrchid. It's a drive from NY but I have some college friends out there, I think. The one near me says every other month but didn't post their latest meeting or reply to my email.
I’m in Milwaukee and have not found an in person support group. It is very frustrating. I just started using this app a couple days ago and rely on it for support and encouragement. I feel that online support is much easier because I can access it at any time and I don’t have to leave my bed.