PNH Connection

PNH Connection

This electronic newsletter, sent quarterly, connects you with recently posted content you will want to share with those on your healthcare team. You will receive the most up-to-date information and support on all aspects of treating, managing, and living well with paroxysmal nocturnal hemoglobinuria (PNH).

As important new information becomes available, our challenge is to bring it to you quickly and in convenient ways to enable you to be better informed about developments and progress that you can use as a patient or family member.

You’ll also receive advanced notice of upcoming webinars and webcasts in our Online Learning Center.

SIGN UP TODAY to receive this quarterly newlsetter.

Issues

2015

  • August 2015
    • Immunosuppressive Therapy and Stem Cell Transplantation
    • 2015 Research Grant Recipient: Anastastios Karadimitris
    • Watch Our Standing Up for Your Health Videos!
    • Do-It-Yourself Healthcare
    • Resources for Parents of Pediatric Patients
    • AA&MDSIF Annual Report Now Available
    • PNH Awareness Week and 10th Annual NYC Walk!
    • Clinical Trials
    • Hope in Action: Melanie Marquez
  • May 2015
    • Overlap Syndromes: When Aplastic Anemia or MDS Appear With PNH
    • PNH Travel Grants for Patients
    • New Funding for PNH Research
    • 2015 Research Grants Awarded
    • PNH Experts to Speak at Conferences
    • New Transfusions Guide Available
    • Clinical Trials
    • Story of Hope: Ellen's story
  • February 2015
    • Find the PNH Foundation on Facebook
    • Expert Speaks About the Latest PNH Research
    • PNH Specialists to Speak at 2015 Conferences
    • PNH Research Studies Point to New Priorities
    • PNH basics in the Online Learning Center
    • Clinical Trials
    • Story of Hope: Emma's story
  • January 2015
    • Find the PNH Foundation on Facebook
    • Dr. Carlos DeCastro on the latest in PNH research and treatment
    • PNH experts at AA&MDSIF Patient and Family Conferences
    • Research Studies and New Priorities
    • PNH basics in the Online Learning Center
    • Clinical Trials
    • Story of Hope: Emma's story

2014

  • December 2014
    • PNH Foundation Website Launched
    • Interview from ASH
    • Fatigue
    • What Do Patients and Their Doctors Want From Research?
    • Clinical Trials and Children
    • PNH Walk Raises Over $35,000
  • August 2014
    • PNH Awareness Week and Annual NYC Walk!
    • New Global Resources for Patients and Families
    • Don't Let Your PNH Story Go Untold!
    • PNH FAQ: What Causes Hemolysis?
    • Did You Know?
    • Stephen King: Patient, Educator, and Volunteer
    • AA&MDSIF’s Promise to You…HOPE
    • 2014 Conferences
    • NORD's PNH Meetings
    • It's PNH 101 -- Learn Online
    • PNH Webinars
    • Meet the Researchers
    • PNH Clinical Trials
    • Story of Hope: Jamie Lam
  • April 2014
    • Introduction
    • AA&MDSIF Strengthens Ties to PNH Foundation
    • International Scientific Symposium Concludes
    • Donor Generosity to Fund New PNH Research
    • 2014 Conferences and Live PNH Webcast
    • NORD's PNH Meetings
    • It's PNH 101! Learn  Online
    • PNH Webinars
    • PNH Research Retrospective
    • PNH Clinical Trials
    • Story of Hope: Johnna Corson