NF1
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Neurofibromatosis: A Very Ugly Disease Which Affects Very Beautiful People
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Back in 1997, my family and I sat inside the neurologists’ office at the Children’s Hospital of Philadelphia (CHOP) and waited patiently for the results of my son’s global medical evaluation. There were tests to order more…
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Why NF1 Is Not About the Tumors
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Over the past few days, I had the opportunity to read various Facebook and email comments about children being newly diagnosed with the dreaded Neurofibromatosis disease. I have also spoken with mothers who worry about the effects of this disease. This…