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Thu May 24, 2018, 12:11 PM
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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, 52, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD. CURRENTLY TAKING JAKAFI FOR GVHD. 
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