What do you do when your child is diagnosed with a rare, destructive disorder? What if you were told she was one of 30 others in the world identified with the disease and there was no treatment? Sophie’s Neighborhood is a nonprofit organization founded in response to Sophie Feder Rosenberg’s diagnosis of Multicentric Carpotarsal Osteolysis (MCTO) Syndrome. Sophie was misdiagnosed with Juvenile Idiopathic Arthritis for a year until the correct diagnosis was discovered through Whole Exome Sequencing, one of the most extensive genetic tests available.
In a matter of a moment, our understanding of Sophie’s condition went from being within a large subset of children with a very treatable disorder - juvenile arthritis - to suddenly being one in 30 with a crippling, life-altering disease that has no treatment or cure.
Please visit www.sophiesneighborhood.org
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