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Where rare isn’t so rare


It is a profoundly strange experience, going to a place where your (nearly) one-in-a-million condition is common. Strange isn’t bad, it’s just…weird!

Last weekend, nearly 120 people from infants to senior citizens gathered for the 12th Moebius Syndrome Foundation Conference in Long Beach. To put it in perspective, under 100 people total (and 20ish with Moebius) gathered for the first Conference in 1994.

It’s weird to look at a (figurative) lot of people who look somewhat like you. It’s discombobulating. But good.

Of course the sessions and everything are great and the information-sharing is incredible, but the true value of a conference for a rare disorder is the face-to-face relationships you form. 

When you go home and real life intrudes things get filtered, Moebius is important but not as important as work and the day-to-day routines, so in a way making a weekend all about Moebius is important for all involved.

That was incoherent. But something slightly sappy but too exhausted to form coherent sentences is my post-Conference train of thought right now.

to quote the incomperable Rick Guidotti

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