So this is amazing news. Even if I never go there for treatment (once it's officially open, which will take a while), I'll have a kind of central clearing house for information on the damned thing. It'll eventually save me a lot of Googling and may help cut down on the amount of experimentation I have to do with treatment options.
This comes the morning after another sleepless night. I love going to Pilates, because my friend/teacher is amazing and I feel like I'm improving my condition, but I often suffer for it for the next 24 hours (sometimes I'm FINE and I'm a very happy camper!) No pain last night, but a seized muscle in my hip kept me from sleeping and all night I was combining stretching/heating pad/massage stick til I collapsed from exhaustion as the morning sun was coming up. So knowing there are medical professionals in a centralized location who are going to be focused specifically on EDS has been great news to wake up to.