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#Mightyheart #empower #AmbassadorEhlersDanlosSyndrome #AmbassadorRaredisease #Awareness #EhlersDanlosSyndrome #RareDisease #Proclamation #Biologydept #Buffalostate #PatientAdvocates

So I was honored by the town I live in, Cheektowaga NY. I took this Picture with a #Mightyheart I got at #NORDLRL confrene. I loved your booth and I love to spread awareness SO thi is me with #Buffalostate new head of the #biology dept. We met to discuss the conference at #GlobalGenes and the Proclamation as well as Graduate School.

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Where is everyone? #GlobalGenes #2018GGSummit

This year was my first time attending the Global Genes Rare Summit and all I can wonder coming out of the summit is where are all the groups and non-profits. It seemed to me that this is the place to be for the most cutting edge information, a great way to learn and a great way to network but I could only find one other #chromosaldeletion group there. Where is everyone? Why don't people want to expose themselves to learn the most they can from others in the rare disease community.  Where are my other chromosomal deletion groups?  Are you out there?