Two Rare Diagnoses, One Powerful Partnership Scleroderma and PAH: Patient, Neal McDermott and Dr. Steve Mathai unpack how the intersection of two rare diseases requires trust, early action, and deeply personalized care. This episode explores what happens when medical expertise meets patient resilience, and why collaboration and clinical trials matter more than ever in changing the outcomes of rare disease.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials [http://www.phaware.global/clinicaltrials]. Follow us on social @phaware Engage for a cure: www.phaware.global/donate [https://www.phaware.global/donate] #phaware #phawareMD Share your story: info@phaware.global Like, Subscribe and Follow us: www.phawarepodcast.com [https://www.phawarepodcast.com]. @HopkinsMedicine [https://x.com/HopkinsMedicine?lang=en]

Episode 564 - Neal McDermott and Steve Mathai, MD

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 [http://www.phaware.global/clinicaltrials]. Follow us on social @phaware Engage for a cure: www.phaware.global/donate [https://www.phaware.global/donate] #phaware #phawareMD Share your story: info@phaware.global Like, Subscribe and Follow us: www.phawarepodcast.com [https://www.phawarepodcast.com]. @CedarsSinai [https://x.com/CedarsSinai]

Episode 563 - Khushboo Goel, MD

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 [http://www.phaware.global/clinicaltrials]. Follow us on social @phaware Engage for a cure: www.phaware.global/donate [https://www.phaware.global/donate] #phaware #phawareMD Share your story: info@phaware.global Like, Subscribe and Follow us: www.phawarepodcast.com [https://www.phawarepodcast.com]. @TBX4_Life [https://x.com/TBX4_Life] @PHatStanford [https://x.com/PHatStanford] @michiganstateu [https://x.com/michiganstateu]

Episode 562 - Ripla Arora, PhD

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 [http://www.phaware.global/clinicaltrials]. Follow us on social @phaware Engage for a cure: www.phaware.global/donate [https://www.phaware.global/donate] #phaware #phawareMD Share your story: info@phaware.global Like, Subscribe and Follow us: www.phawarepodcast.com [https://www.phawarepodcast.com]. @TBX4_Life [https://x.com/TBX4_Life]

Episode 561 - Jeffrey Whitsett, MD

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 emotional weight of genetic testing, the inconsistencies in clinical care, and his mission to advocate for early detection and standardized monitoring.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials [http://www.phaware.global/clinicaltrials]. Follow us on social @phaware Engage for a cure: www.phaware.global/donate [https://www.phaware.global/donate] #phaware Share your story: info@phaware.global Like, Subscribe and Follow us: www.phawarepodcast.com [https://www.phawarepodcast.com]. @TBX4_Life [https://x.com/TBX4_Life]





Episode 560 - Luke Stockdale

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 [http://www.phaware.global/clinicaltrials]. Follow us on social @phaware Engage for a cure: www.phaware.global/donate [https://www.phaware.global/donate] #phaware #phawareMD Share your story: info@phaware.global Like, Subscribe and Follow us: www.phawarepodcast.com [https://www.phawarepodcast.com]. @TBX4_Life [https://x.com/TBX4_Life]

Episode 559 - Drs. Matina Prapa and Olivier Danhaive

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 [https://tbx4.org/]. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials [http://www.phaware.global/clinicaltrials]. Follow us on social @phaware Engage for a cure: www.phaware.global/donate [https://www.phaware.global/donate] #phaware Share your story: info@phaware.global Like, Subscribe and Follow us: www.phawarepodcast.com [https://www.phawarepodcast.com]. @TBX4_Life [https://x.com/TBX4_Life]

Episode 558 - Anton Morkin

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 [http://www.phaware.global/clinicaltrials]. Follow us on social @phaware Engage for a cure: www.phaware.global/donate [https://www.phaware.global/donate] #phaware #phawareMD Share your story: info@phaware.global @BrownMedicine [https://x.com/BrownMedicine]

Episode 557 - Gaurav Choudhary, MD

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.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials [https://www.phaware.global/clinicaltrials]. Engage for a cure: www.phaware.global/donate [https://www.phaware.global/donate] #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com [https://www.phawarepodcast.com]. @teamphhope [https://x.com/teamphhope]



Episode 556 - Lenise Whitley

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 [http://www.phaware.global/clinicaltrials]. Follow us on social @phaware Engage for a cure: www.phaware.global/donate [https://www.phaware.global/donate] #phaware Share your story: info@phaware.com

Episode 555 - Nicole Fitzgerald

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 diagnosis and treatment can mean the difference between life and death. Topics range from the importance of early diagnosis and global PH awareness, to the impact of clinical trials to how patient support and advocacy are paramount to battling this disease. Learn more about PH at www.phaware.global

Steve Van Wormer

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