I had a STC for PNH in 2011. I was referred to a specialist by my HMO that I had at the time. I, like most ppl had never heard of PNH until my diagnosis. You can probably check the NORD website and maybe Alexion for specialist info. I have also been told that many experts are going to be affiliated w/ med school med centers, but my clinic is not; their prim. focus are cancers of the blood. Good luck in your treatment.
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