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Living with PNH

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Learning to live with an “invisible disability” like PNH includes discussing your condition with family, friends, and coworkers and understanding your rights in the workplace.

The resources available here have been developed to help you manage this disruption in your life, particularly your work life, and to help you make informed decisions about your options for treatment in the future.

Workplace Rights and Responsibilities for PNH Patients

Should take 9 seconds or less (at 1Mbps). 1.2MB PDF

Disability Insurance for PNH Patients

Should take 2 seconds or less (at 1Mbps). 0.2MB PDF

Guidelines for Talking with HR and Your Doctor about Workplace Issues

Should take 1 second or less (at 1Mbps). 0.1MB PDF

Coming soon:

  • Guide for federal and state resources
  • Financial issues

Listen now:

Our patients, families, and caregivers have been asking us for more ways to learn about rare blood cancers and bone marrow failure diseases. So, we're coming to you today, thanks to generous support from individual donors and our corporate partners.

Living with PNH: Understanding The Americans with Disabilities Act, for Patients

Learn about the Americans with Disabilities Act and how it applies to patients.  Attorney Chris Mills shares his expertise in this episode.

Living with PNH: Understanding the Family Medical Leave Act

What type of documentation do you need to take advantage of the Family Medical Leave Act?  Attorney Chris Mills answers questions from Leigh Clark, Director of Paitent Services at AAMDSIF.

Living with PNH: In the Workplace


Living with PNH: Talking to Your Employer About the Family and Medical Leave Act, FMLA


Living with PNH: Talking with Your Doctor


Living with PNH: How to be Proactive with your Doctor Concerning your PNH care


Living with PNH: Sharon's Story


Living with PNH: Tamir's Story


These resources are supported by an educational grant from Novartis

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