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Hi my name is mitch I have had active VHL for 21 years currently I live in Colorado but will be relocating to Maryland in early 2009. I previously was studied at NIH many years ago does anyone know of a very good PCP or program were I can maintain treatment. I'm not sure if NIH can treat me or if I should look around for care if NIH I need a contace person there?
You should certainly contact the NIH and inquire.
Even if they do accept you into the program, however, you still need a good primary care doctor and what I like to call your "home team". Don't forget that NIH is a research hospital. They provide excellent care when you are there, but they are not the ones you call for the flu, or for emergency care.
You need to develop a team you can rely on when you need them, and they need to be fully informed about your VHL.
Contact us-md@vhl.org (our Maryland chairwoman) and ask about local doctors she trusts.
Best wishes,
Joyce
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