PODCAST

I"m Aware That I"m Rare: the phaware® podcast

I"m Aware That I"m Rare: the phaware® podcast is devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because early

health & fitness medicine

All Episodes

Khushboo Goel, MD phaware® interview 563

I"m Aware That I"m Rare: the phaware® podcast ·

2026/03/11

The Hidden Daily Battles of Pulmonary Hypertension Patients Behind the clinical charts and heart catheterizations lies a world of emotional, financial, and physical challenges that PH patients face every day. Dr. Khushboo Goel opens up about what she's learned from patients in support groups—and how it's reshaping her approach to care. My name is Dr. Khushboo Goel. I am a pulmonary hypertension specialist here at Cedars-Sinai. I'm part of the faculty for the Division of Pulmonary and Critical

13:50

Episode 563 - Khushboo Goel, MD

I"m Aware That I"m Rare: the phaware® podcast ·

2026/03/10

The Hidden Daily Battles of Pulmonary Hypertension Patients Behind the clinical charts and heart catheterizations lies a world of emotional, financial, and physical challenges that PH patients face every day. Dr. Khushboo Goel opens up about what she's learned from patients in support groups—and how it's reshaping her approach to care. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate

Ripla Arora, PhD - phaware® interview 562

I"m Aware That I"m Rare: the phaware® podcast ·

2026/03/04

Why the Clues to Pulmonary Hypertension Start Before Birth When Ripla Arora first studied TBX4 as a young PhD student, no one imagined this gene held secrets to life-threatening lung diseases. Now, years later, her early work is the foundation of a global effort to unlock the fetal origins of pulmonary hypertension. My name is Ripla Arora and I'm an Associate Professor in the OB-GYN department and the biomedical engineering department at Michigan State University. I also am part of the Institute of

13:00

Episode 562 - Ripla Arora, PhD

I"m Aware That I"m Rare: the phaware® podcast ·

2026/03/03

Why the Clues to Pulmonary Hypertension Start Before Birth When Ripla Arora first studied TBX4 as a young PhD student, no one imagined this gene held secrets to life-threatening lung diseases. Now, years later, her early work is the foundation of a global effort to unlock the fetal origins of pulmonary hypertension. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware #phawareMD Share

Jeffrey Whitsett, MD - phaware® interview 561

I"m Aware That I"m Rare: the phaware® podcast ·

2026/02/25

Cracking the Code: How Genetics Is Rewriting Neonatal Medicine Dr. Jeffrey Whitsett reflects on five decades in neonatal care, tracing the evolution from limited support for preemies to today's cutting-edge genetic discoveries. Discover how rare gene mutations like TBX4 are reshaping our understanding of lung development and why collaboration with families is key to the next era of life-saving treatments. I'm Jeffrey Whitsett. I'm a neonatologist at Children's Hospital Medical Center. I am the

09:30

Episode 561 - Jeffrey Whitsett, MD

I"m Aware That I"m Rare: the phaware® podcast ·

2026/02/24

Cracking the Code: How Genetics Is Rewriting Neonatal Medicine Dr. Jeffrey Whitsett reflects on five decades in neonatal care, tracing the evolution from limited support for preemies to today's cutting-edge genetic discoveries. Discover how rare gene mutations like TBX4 are reshaping our understanding of lung development and why collaboration with families is key to the next era of life-saving treatments. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us

Luke Stockdale - phaware® interview 560

I"m Aware That I"m Rare: the phaware® podcast ·

2026/02/18

From Knee Pain to Gene Discovery: One Family's Unexpected Diagnosis What started as routine investigations into hereditary knee problems turned into a life-altering discovery for Luke Stockdale and his family — a TBX4 gene mutation linked to pulmonary arterial hypertension (PAH). In this episode, Luke shares how his mother's journey through years of respiratory care led to a rare diagnosis, and how it's changed the course of his entire family's future. With candor and urgency, he discusses the

11:14

Episode 560 - Luke Stockdale

I"m Aware That I"m Rare: the phaware® podcast ·

2026/02/17

Drs. Matina Prapa and Olivier Danhaive - phaware®...

I"m Aware That I"m Rare: the phaware® podcast ·

2026/02/11

How a Global Team Is Rewriting the TBX4 Playbook Rare diseases thrive in isolation. TBX4Life is changing that. In this episode, Drs. Prapa and Danhaive share how international collaboration is creating real-time change for patients. From newborn screening to natural history studies to rethinking how we talk about genetic testing, they're helping create a roadmap to a cure. Matina Prapa, MD, PhD: Hi, my name is Martina Prapa. I'm a clinical geneticist. I work in London, at few centers, St. George's

15:03

Episode 559 - Drs. Matina Prapa and Olivier Danhaive

I"m Aware That I"m Rare: the phaware® podcast ·

2026/02/10

How a Global Team Is Rewriting the TBX4 Playbook Rare diseases thrive in isolation. TBX4Life is changing that. In this episode, Drs. Prapa and Danhaive share how international collaboration is creating real-time change for patients. From newborn screening to natural history studies to rethinking how we talk about genetic testing, they're helping create a roadmap to a cure. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for

Anton Morkin - phaware® interview 558

I"m Aware That I"m Rare: the phaware® podcast ·

2026/02/04

One Dad's Mission to Cure His Son's Genetic Disease When Anton Morkin's son was diagnosed with "idiopathic" pulmonary hypertension, he refused to accept "no known cause" as an answer. What followed was a crash course in genetics, the discovery of a rare mutation, and the formation of a worldwide coalition, TBX4Life. My name is Anton Morkin. I am from Germany. In 2020, my son was diagnosed with severe pulmonary hypertension. We were just rushed into many new things for us. People were saying your

17:12

Episode 558 - Anton Morkin

I"m Aware That I"m Rare: the phaware® podcast ·

2026/02/03

One Dad's Mission to Cure His Son's Genetic Disease When Anton Morkin's son was diagnosed with "idiopathic" pulmonary hypertension, he refused to accept "no known cause" as an answer. What followed was a crash course in genetics, the discovery of a rare mutation, and the formation of a worldwide coalition, TBX4Life. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your

Gaurav Choudhary, MD - phaware® interview 557

I"m Aware That I"m Rare: the phaware® podcast ·

2026/01/28

How an AI Stethoscope Could Transform Global Healthcare What if diagnosing PH didn't require an echo or heart catheterization—but just a AI powered stethoscope? Dr. Gaurav Choudhary talks real-world use cases, validation studies, and the global potential of portable, AI-powered diagnostics in under-resourced settings. My name is Gaurav Choudhary. I'm a cardiologist. I'm in Providence, Rhode Island. I'm a Professor of Medicine at Brown University, Alpert Medical School of Brown University. As

16:21

Episode 557 - Gaurav Choudhary, MD

I"m Aware That I"m Rare: the phaware® podcast ·

2026/01/27

How an AI Stethoscope Could Transform Global Healthcare What if diagnosing PH didn't require an echo or heart catheterization—but just a AI powered stethoscope? Dr. Gaurav Choudhary talks real-world use cases, validation studies, and the global potential of portable, AI-powered diagnostics in under-resourced settings. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware

Lenise Whitley - phaware® interview 556

I"m Aware That I"m Rare: the phaware® podcast ·

2026/01/21

The Loneliness of Pulmonary Hypertension After years of being dismissed, misdiagnosed, and told nothing was wrong, Lenise Whitley finally got an answer - pulmonary hypertension. In this powerful episode, she shares her journey through cardiac arrest, loss, faith, and isolation, and how support groups, advocacy, and self-belief helped her reclaim her voice. A raw, honest reminder of why being heard can be lifesaving. My name is Lenise Whitley. I currently live in Brooklyn, New York. I've been there

12:47

Episode 556 - Lenise Whitley

I"m Aware That I"m Rare: the phaware® podcast ·

2026/01/20

Nicole Fitzgerald - phaware® interview 555

I"m Aware That I"m Rare: the phaware® podcast ·

2026/01/14

One Teacher's Unexpected Battle with a Silent Killer Nicole Fitzgerald was a full-time special ed teacher juggling work, family, and a big move—until breathlessness and fatigue nearly took her life. What started as stress turned into a life-threatening diagnosis. This is the story of how she faced pulmonary hypertension head-on and redefined her purpose. My name is Nicole Fitzgerald. I am 43 years old. I'm originally from Los Angeles, but I now live in Oklahoma City. I was diagnosed in February of

18:58

Episode 555 - Nicole Fitzgerald

I"m Aware That I"m Rare: the phaware® podcast ·

2026/01/13

One Teacher's Unexpected Battle with a Silent Killer Nicole Fitzgerald was a full-time special ed teacher juggling work, family, and a big move—until breathlessness and fatigue nearly took her life. What started as stress turned into a life-threatening diagnosis. This is the story of how she faced pulmonary hypertension head-on and redefined her purpose. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a

Jean Elwing, MD phaware® interview 554

I"m Aware That I"m Rare: the phaware® podcast ·

2026/01/07

Telehealth Is Ending: What That Means for PH Patients Telehealth use surged during COVID, but what happens next? Dr. Jean Elwing discusses the rapid expansion of telemedicine in pulmonary hypertension, the upcoming expiration of COVID-era telehealth funding in 2026, and why licensure and reimbursement policies could dramatically affect patient care. This episode highlights what's at stake for rare disease patients and why advocacy and awareness are essential to sustaining virtual care options. My

09:37

Episode 554 - Jean Elwing, MD

I"m Aware That I"m Rare: the phaware® podcast ·

2026/01/06

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I"m Aware That I"m Rare: the phaware® podcast

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