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Old Tue Jan 9, 2018, 01:21 PM
GoodDay5150 GoodDay5150 is offline
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Join Date: Sep 2014
Location: Centennial, CO
Posts: 150
Hi Masa. We are sorry to hear you have been diagnosed w/ PNH, but there are many good resources available. In addition to what Neil has referenced, NORD is also a great resource for those or us affected by PNH. I will post the link below. I was transplanted in 2011, and if you search my posts you can read about my experiences w/ PNH.

Mario

https://rarediseases.org/organizatio...support-group/
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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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