Genetic and Rare Diseases Information Center, National Institute of Health, and Office of Rare Diseases and Research. What do these mean, well, I have contacted a Dr. Rubenstein and she guided me to GARD. With GARD, I was to fill out a form to find any specialists in the area - meaning United States. I can not find one that is not in the UK. I am hopeful that this will be a positive find :)
Link to ORD, NIH, & GARD
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