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PNH Paroxysmal nocturnal hemoglobinuria

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Old Wed Feb 5, 2014, 02:54 PM
health reporter health reporter is offline
Join Date: Feb 2014
Location: Bend
Posts: 1
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.


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Old Wed Feb 5, 2014, 03:09 PM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,493
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, 04:00 AM
NLJabbari NLJabbari is offline
Join Date: Aug 2006
Location: San Jose, California
Posts: 139
Thank You Health Reporter
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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