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Old Thu Jul 21, 2011, 07:18 PM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,487
That's an interesting idea, Bill. We have over 2000 forum members (not all of them are active posters) across a range of diagnoses. Still, it may be a reasonable sample size for rare diseases like these if enough members participated. However, I'd assume that the AA&MDSIF, the MDS Foundation, the PNH Registry run by Alexion, and NIH have more data than we could collect here, including names and addresses, while here we're pretty careful about member privacy so many users go only by first names or nicknames and some don't identify their locations.
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