Meet the PH Community

The stories told by the PH community are windows into the world of challenges, resilience and hope that defines the life of every PH patient.

Visit the Our Journeys page to read the stories of 200 patients, caregivers and medical professionals.

Selections from Our Journeys

Ellen HarrisEllen Harris, PH patient

“It suddenly began to dawn on me that this thing had a name, it was a real thing, and it wasn’t because I had a weakness of character and an undisciplined personality, it was because I was sick…” Read Ellen’s story

Marcia BeverlyMarcia Beverly, PH patient

“When you have a disease this rare you want to do all you can do to help others who are fighting for their lives…There is hope, and that's what my life has now become—living for and fighting for hope and a cure.” Read Marcia’s story

Tonya RobertsonTonya Robertson, PH patient and Support Group Leader

“Even though I live with this disease, people are always telling me that I do not look sick. This is a common statement that most PH patients hear. I tell folks “well if I have to be sick, I am glad I can still look good.” Read Tonya’s story


Brenda Weisz, PH patient

“Feel passion, instead of fear. And no matter what, even in a small way, we can make a difference and help someone not go through what many of us have already experienced.” Read Brenda’s story

Ken Schmidt, caregiver, on attending PHA’s Conference in 2006

“At this conference I truly felt that I could give hope and direction to others as well as learning from other attendees…By becoming an active participant, I have helped myself, other attendees, and the cause of PH on my wife’s behalf.” Read Ken’s story



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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.