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PNH Paroxysmal nocturnal hemoglobinuria

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  #1  
Old Wed Feb 5, 2014, 01:54 PM
health reporter health reporter is offline
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PNH news article

I thought some of the readers here might be interested in a couple of articles we ran in the Bend Bulletin this past week. The first is on PNH and the second on the development of Soliris.

http://www.bendbulletin.com/health/1...blood-disorder

http://www.bendbulletin.com/health/1...on-dollar-drug
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Old Wed Feb 5, 2014, 02:09 PM
Neil Cuadra Neil Cuadra is offline
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Thanks, health reporter.

PNH is so rare that it can be big news when a local community member is diagnosed, and even more unusual when a pregnancy is involved.

I hope things turn out well for Lily and her fiancé and that you or they will let us know how their story turns out.

The story about how Soliris came to market is less personal but just as important to PNH patients everywhere.
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Old Thu Feb 6, 2014, 03:00 AM
NLJabbari NLJabbari is offline
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Thank You Health Reporter
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06/2004 my son was dx with SAA at the age of 10. No sibling BM match. He underwent ATG (H)/CsA. Relapsed 05/12 & dx'ed w/PNH. Currently in wait/see mode for Solaris as he is asymptomatic...
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