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

She Was Prepared for Breast Cancer Not for a Rare, Incurable Disease At 30, Sherry Rouse went in for a breast cancer screening. What doctors found instead wasn't cancer, but was something far rarer, and potentially fatal: idiopathic pulmonary arterial hypertension Sherry recounts the emotional rollercoaster of being blindsided by a rare illness and how she turned that chaos into advocacy and hope. 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 story: info@phaware.global Like, Subscribe and Follow us: www.phawarepodcast.com.

The Insurance Plan You Never Knew You Needed What does a lung transplant have in common with car insurance? More than you'd think. Dr. Nicholas Kolaitis shares why seeing a transplant team early, even if you're stable, can help protect your future. 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 story: info@phaware.global Like, Subscribe and Follow us: www.phawarepodcast.com. #phawareMD @UCSFHospitals

The Most Dangerous Phrase in Rare Disease: "You Look Fine." Diagnosed with idiopathic pulmonary arterial hypertension in her early 20s after years of being dismissed, Lala Juarez knows what it's like to be told "you look fine" while fighting for breath. In this deeply honest conversation, she shares her journey from misdiagnosis and IV therapy to the shock of being told it was finally "time" for a double lung transplant. Now four years post-transplant, Lala reflects on rediscovering everyday joys, navigating loss and trauma, and why support groups became a lifeline that made her feel seen, validated, and never alone. Her story is one of preparation, advocacy, resilience, and learning that healing doesn't mean going back to who you were, but becoming someone more present, empathetic, and aware that rare doesn't mean invisible. 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 story: info@phaware.global Like, Subscribe and Follow us: www.phawarepodcast.com.

The Daily Discipline of PH: Living by the Liter and Label Most people don't count every sip of water or every grain of salt. Angela Brown does. This episode dives into the daily discipline required to live with pulmonary hypertension—from navigating restaurant menus to surviving a exotic vacations in sweltering heat with strict fluid and sodium limits. 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 story: info@phaware.global Like, Subscribe and Follow us: www.phawarepodcast.com. @phacanada

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. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware #phawareMD Share your story: info@phaware.global Like, Subscribe and Follow us: www.phawarepodcast.com. @HopkinsMedicine

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 #phaware #phawareMD Share your story: info@phaware.global Like, Subscribe and Follow us: www.phawarepodcast.com. @CedarsSinai

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 your story: info@phaware.global Like, Subscribe and Follow us: www.phawarepodcast.com. @TBX4_Life @PHatStanford @michiganstateu

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

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

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 a cure: www.phaware.global/donate #phaware #phawareMD Share your story: info@phaware.global Like, Subscribe and Follow us: www.phawarepodcast.com. @TBX4_Life

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 story: info@phaware.global Like, Subscribe and Follow us: www.phawarepodcast.com. @TBX4_Life

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 #phawareMD Share your story: info@phaware.global @BrownMedicine

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. Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com. @teamphhope

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 cure: www.phaware.global/donate #phaware Share your story: info@phaware.com

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. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com. #phawareMD @uc_health @ElwingJean @accpchest

You Can Grieve and Still Fight: Love, Loss, and Living with PAH She cried for the life she lost. Then, she fought for the one she has. PAH patient, Jasmine Wells discusses what it really means to grieve the old you while finding purpose in the new. From navigating relationships, infections, and fear of transplant, to leading support groups and fighting misinformation. 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 story: info@phaware.com

The Pulse of a Fighter: Survival, Stigma, and Shaking Up Healthcare They told him he had months to live. He used them to rewrite the rules. Kevin Allen survived near-death, systemic medical neglect, and an invisible disability most physicians don't understand. Today, he's pushing policy, pressuring universities, and pioneering new models of PH patient-centered 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 #phaware Share your story: info@phaware.com

Why Families Belong at the Table: PHriends of the PPHNet Dr. Russel Hirsch breaks down the core pillars of the PPHNet, from shared research to consistent care standards, and explains why the next chapter in pediatric pulmonary hypertension care must be written with families, not just for them through the PHriends family-led committee. 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 story: info@phaware.com #phawareMD #PPHNet @PPHNet @CincyChildrens

Jennifer Keeley and Mary Whittenhall, experienced nurse practitioners in the field of pulmonary hypertension, discuss the management of cough in patients receiving inhaled therapies for pulmonary hypertension and interstitial lung disease. #GossamerBioPartner #sponsored This Special Edition episode is sponsored by Gossamer Bio. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com. #phawareMD #PHILD @GossamerBio @AHNtoday

FIGHTER TO SURVIVOR: ASHLEE GAMBINO'S BATTLE BEYOND THE RING In this gripping episode, Ashlee "The Mobwife" Gambino shares her journey from a fierce MMA and professional boxing career to battling idiopathic pulmonary arterial hypertension. Discover how she turned her fighter's mindset into a lifeline, navigating the unimaginable loss of her daughter, Katana, and fighting for her life with relentless determination. 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 story: info@phaware.com @teamphhope