Living with PNH | Aplastic Anemia & MDS International Foundation Return to top.

Living with PNH

Introductory image: Living with PNH - graphic

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

Coming soon:

  • Guide for federal and state resources
  • Disability insurance
  • Financial issues

Coming soon:

  • Workplace accommodations for health-related needs
  • Guidance for discussing “invisible disabilities” with family, friends and coworkers
  • Managing side effects of PNH treatment

Coming soon:

Short videos will focus on elements of Living with PNH and will be used primarily on social media to draw attention to the range of resources available as part of this initiative.  These videos will include:

  • brief interviews with patients, health care providers and legal and HR experts
  • animated pieces on workplace and quality of life issues
  • edited excerpts from webinars

These resources are supported by an educational grant from Novartis

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