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Hi Gina 66,
My husband has been a patient at NIH in Bethesda where Dr. Young is since March, 2009. Unless I'm mistaken they only take patients who qualify to be part of a clinical trial. If accepted, any treatment done there is free to the patient. Along the way they have given his hematologist instructions on what they needed for their research along with regular visits to Bethesda.
I think I'm correct in saying that patients don't just make appointments - they have to be screened to see if they qualify.
Our hematologist was the one who convinced them to take Don as his case was so unusual she had not been able to get a firm diagnosis for 6 months.
Good luck!
Sally
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