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Old Fri Nov 28, 2014, 10:45 PM
Susan Susan is offline
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Join Date: Sep 2003
Location: Chicago, Il
Posts: 101
FL PNH Spec

Keep in mind there are only 7 or 8 true PNH experts here in the states. These specialists will have seen over 100 PNH patients, (many of them have seem 300+ patients), be both PNH researchers and clinicians and be up to date on the latest research. This usually means being a member of the International PNH Interest Group. PNH is so rare you want to see someone who has as much experience as possible.

The closest one to Florida is Dr Carlos De Castro at Duke. He took over Wendell Rosse's PNH clinic. He is ok. Dr Monica Bessler at Univ of Penn is excellent. On the east coast there is also Dr David Araten at New York University. He is a sweetheart and is quite popular. I see both Araten and Bessler, Bessler more often just because I'm not that fond of NYC.
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