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PNH Paroxysmal nocturnal hemoglobinuria

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Old Thu May 24, 2018, 12:11 PM
GoodDay5150 GoodDay5150 is offline
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Join Date: Sep 2014
Location: Centennial, CO
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No NORD PNH Meetings In 2018

I have been informed by a rarediseases.org representative that NORD is not hosting any PNH meetings in 2018. She did direct me to

http://www.aamds.org/education/conferences

Any new PNH patients out there? I don't remember if I posted this before, but I was informed last year that my donor was interested in communicating with me, but so far I have not heard anything from them. I will be sure to pass anything along if I ever do.

Hope all is well for those of us impacted by PNH



Mario
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MARIO, 46, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD.
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