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In Healthcare Fight, We Saw How Advocacy Works

Over the past several months the PH and rare disease community have seen significant progress towards ensuring that everyone with a condition can get access to the proper specialized care they require. This year alone, I’ve become increasingly more involved with disease advocacy; it mattered to me. With…

Phaware Podcast: Peter Leary, MD, Part 1

This podcast series, created and produced by phaware, is being offered as a regular guest feature on Pulmonary Hypertension News to bring the voices and life experiences of PH patients, family members, caregivers, healthcare specialists, and others to our readers. You may listen to the podcast directly, or read it…

Phaware Podcast: Roham Zamanian, MD, Part 2

This podcast series, created and produced by phaware, is being offered as a regular guest feature on Pulmonary Hypertension News to bring the voices and life experiences of PH patients, family members, caregivers, healthcare specialists, and others to our readers. You may listen to the podcast directly, or read it via…

Angry? You Bet ― Here’s What to Do

Think back to when you were a child in the school yard. There was always someone who never liked playing by the rules and ruined recess for everyone. The first time the rules weren’t followed, you may have stopped and tried to calmly explain…

Phaware Podcast: Roham Zamanian, MD, Part 1

This podcast series, created and produced by phaware, is being offered as a regular guest feature on Pulmonary Hypertension News to bring the voices and life experiences of PH patients, family members, caregivers, healthcare specialists, and others to our readers. You may listen to the podcast directly, or read it…

Phaware Podcast: Murali Chakinala, MD, Part 2 of 2

This podcast series, created and produced by phaware, is being offered as a regular guest feature on Pulmonary Hypertension News to bring the voices and life experiences of PH patients, family members, caregivers, healthcare specialists, and others to our readers. You may listen to the podcast directly, or read it…

Why I Avoid Congratulating Transplant Recipients

When I tell someone I had a heart-lung transplant, I’m usually greeted with “congratulations,” unless they are particularly clueless and say, “Get well soon.” When I was dealing with intense postoperative pain and brain fog, it upset me to be congratulated on my “new life.” With multiple blood draws, tests,…


A Conversation With Rare Disease Advocates