Recently diagnosed with Yao Syndrome, any autoinflammatory groups?

I was recently diagnosed with Yao Syndrome. For a while, my rheumatologist thought I had Lupus, but I didn’t respond to any treatments and kept getting worse. When Saphnelo didn’t work, I wanted to give up, because it was supposed to be some sort of miracle cure for lupus! After seeing one specialist after another, someone finally did genetic testing. I didn’t expect it to come back with anything, and I was surprised when there were variants in my NOD2 and another gene. but the report only referenced Blau Syndrome and Crohn’s, which I knew I didn’t have.

My doctor pushed me to go get evaluated at Stony Brook saying that there’s a NOD2 specialist there, and he would see me anyway. I didn’t know she had already called and spoken to them about me, but she didn’t feel comfortable explaining Yao to me because she didn’t know much about it, or if I had it for sure. I made an appointment with the wrong doctor at first lol. They switched me to Dr. Yao. I had stopped looking up doctors at this point and just went wherever other doctors sent me. So, I had never heard of Yao Syndrome, the disease named after Dr. Yao. I was crying as I was reading the papers Dr. Yao gave me after he diagnosed me, because it was like reading about everything I had gone through.

I came on here looking to find an autoinflammatory support group. I knew finding a Yao Syndrome support group was a long shot, because it’s rare. There is one on Facebook, but I’d prefer to be more private about my diagnosis. I don’t think I’m ready to post much under my name about this. Is there an auto inflammatory support group here? I couldn’t seem to find one. If not, are there autoinflammatory people in this group? Or, is there another website or app you use for autoinflammatory support groups?

Side note: It seems like there are only three specialist for Yao Syndrome in the whole country, and one of them is at Mayo. You would think they would have a group on here - since Mayo is one of the only the places to go!