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
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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