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Old Fri Mar 27, 2015, 01:23 PM
mharrell mharrell is offline
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Join Date: Dec 2008
Posts: 11
You'll probably get more response if you post the survey on the PNH support site, pnhdisease.org.

I don't have PNH, my son was diagnosed with it, but I can tell you that he wouldn't know how to answer the question "Are you currently being treated for PNH?" because what do you mean by "treated"? Does that only refer to being on Soliris (my son doesn't need it)? Does it mean being monitored with blood tests? It's too vague.
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