Patient Voices Steve Van Wormer Patient Voices Steve Van Wormer

From Wedding Bells to a Life-Altering Diagnosis

I’m Aware That I’m Rare: the phaware® podcast
Episode 581 - Cathleen Harrington

Cathleen Harrington was young, athletic, and newly engaged when pulmonary hypertension changed everything. Twenty-one years later, after surrogacy, clinical trials, a lung transplant, and battles with rejection she’s still here, still fighting, and still building a life around gratitude, hope, and her children.

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Two Rare Diagnoses, One Powerful Partnership

I’m Aware That I’m Rare: the phaware® podcast
Episode 564 - Neal McDermott and Steve Mathai, MD

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.

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Why the Clues to Pulmonary Hypertension Start Before Birth

I’m Aware That I’m Rare: the phaware® podcast
Episode 562 - Ripla Arora, PhD

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.

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Cracking the Code: How Genetics Is Rewriting Neonatal Medicine

I’m Aware That I’m Rare: the phaware® podcast
Episode 561 - Jeffrey Whitsett

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.

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How a Global Team Is Rewriting the TBX4 Playbook

I’m Aware That I’m Rare: the phaware® podcast
Episode 559 - Matina Prapa, MD, PhD and Olivier Danhaive, MD

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.

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How an AI Stethoscope Could Transform Global Healthcare

I’m Aware That I’m Rare: the phaware® podcast
Episode 557 - Gaurav Choudhary, MD

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.

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Best Practices for Managing Cough in PAH Patients Receiving Inhaled Therapies.

I’m Aware That I’m Rare: the phaware® podcast
Episode 550 - Jennifer Keeley, DPN and Mary Whittenhall, MSN

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.

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Scars and Survival: Rebuilding Life After a Devastating Diagnosis

I’m Aware That I’m Rare: the phaware® podcast
Episode 548 - Sophia Esteves

After countless hospital stays, new medications, and near-breaking points, Sophia Esteves found the reason she wanted to live — and it wasn’t just for herself. This episode dives into her spiritual and emotional transformation from patient to powerhouse advocate, and how she now helps others reclaim hope through honesty and grit.

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Physician and Medical Expert Voices Steve Van Wormer Physician and Medical Expert Voices Steve Van Wormer

The Importance of Having a Specialized Center for PH

I’m Aware That I’m Rare: the phaware® podcast
Episode 535 - Akshay Muralidhar, MD

In this episode, Dr. Akshay Muralidhar, Co-Director of the Pulmonary Hypertension Center of Excellence at Arizona Pulmonary Specialist in Phoenix, discusses the importance of having a specialized center for pulmonary hypertension. Dr. Muralidhar also highlights the challenges of managing patients with substance abuse issues, particularly methamphetamine use. Dr. Muralidhar emphasizes the importance of access to care, particularly for underserved communities, and the need for outreach programs to ensure that all patients have access to treatment options.

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Physician and Medical Expert Voices Steve Van Wormer Physician and Medical Expert Voices Steve Van Wormer

Building on Foundational Pathways:A New Treatment Option for PAH

I’m Aware That I’m Rare: the phaware® podcast
Episode 534 - Raj Parikh, MD

Dr. Raj Parikh from Hartford Hospital discusses building on foundational pathways with treatment options for Pulmonary Arterial Hypertension (PAH) patients. He also emphasizes the value of clinical trials as well as the importance of a good doctor/patient relationship.

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Physician and Medical Expert Voices Steve Van Wormer Physician and Medical Expert Voices Steve Van Wormer

PAH Clinical Trials: Why Diversity and Inclusion Matter

I’m Aware That I’m Rare: the phaware® podcast
Episode 529 - Tijana Milinic, MD & Lia Barros, DPN

Dr. Tijana Milinic and Lia Barros, DNP, from the University of Washington take a deep dive into the world of pulmonary arterial hypertension (PAH) clinical trials and discuss why diversity and inclusion matter. They explore the hidden biases in medical research and the real-world consequences of exclusion.

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Racial and Ethnic Disparities in PAH Treatment

I’m Aware That I’m Rare: the phaware® podcast
Episode 528 - Lana Melendres-Groves, MD

Dr. Lana Melendres-Groves dives into her research on racial and ethnic disparities in PAH treatment. From differences in medication access to the role of social determinants of health, she explores how systemic barriers impact care and what steps can be taken to ensure equity and inclusivity in PAH management.

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Beyond the Clinical Trial: What Real-World Data Means for You.

I’m Aware That I’m Rare: the phaware® podcast
Episode 524 - Jason Weatherald, MD

Think only people in clinical trials help advance medicine? Think again. Dr. Jason Weatherald explains how your everyday clinic visits — from walk tests to how you feel — can help shape the future of pulmonary hypertension treatment. Learn what “real-world evidence” is and why your story matters more than you think.

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Physician and Medical Expert Voices Steve Van Wormer Physician and Medical Expert Voices Steve Van Wormer

Redefining PAH Treatment: The Next Frontier in Medicine

I’m Aware That I’m Rare: the phaware® podcast
Episode 516 - Ron Zolty, MD

Dr. Ron Zolty delves into groundbreaking advancements in treating pulmonary arterial hypertension. From the historical use of vasodilators to the revolutionary promise of sotatercept and seralutinib, Dr. Zolty unpacks how science is moving closer to halting - and possibly even reversing - PAH.personalized treatment approaches.

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Physician and Medical Expert Voices Steve Van Wormer Physician and Medical Expert Voices Steve Van Wormer

Putting Patients at the Center: The Future of PH Research

I’m Aware That I’m Rare: the phaware® podcast
Episode 564 - Harrison “Hap” Farber, MD

Harrison “Hap” Farber, MD gives a recap of PHenomenal Hope 2024, emphasizing its patient-centered approach to pulmonary hypertension (PH) research. He highlights patient stories, particularly Eric Borstein’s inspiring journey of recovery and advocacy, and underscores the importance of patient-provider collaboration. Additionally, he addresses challenges in PH care, such as inclusivity in clinical trials, the role of AI in medicine, and the complexities of treating patients with substance use disorders.

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28 Years With PH: A Journey of Hope, Resilience and Progress

I’m Aware That I’m Rare: the phaware® podcast
Episode 505 - Jodi Berry

On the 28th anniversary of her PH diagnosis, Jodi Berry shares her journey of living with pulmonary hypertension. Despite facing an initial prognosis of only a few years to live, Jodi’s determination and the support of her family, friends, and healthcare professionals helped her manage her condition while maintaining an active lifestyle. Over time, advancements in treatments and her proactive participation in clinical trials provided hope and improved her quality of life.

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Why Patient Voices Matter in the Future of PH Research

I’m Aware That I’m Rare: the phaware® podcast
Episode 501 - Lisa Mielniczuk, MD

Dr. Lisa Mielniczuk, a cardiologist at the Mayo Clinic in Rochester, shares her personal journey of becoming interested in pulmonary hypertension and the challenges faced by patients in accessing care. Dr. Mielniczuk emphasizes the importance of building connections with patients and involving them in decision-making. She discusses the CRAVE study, which aims to test novel and repurposed therapies for right heart failure using a platform trial design. She highlights the importance of patient involvement in the trial design and its upcoming feasibility study.

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Can a New Trial Change the Future of Right Heart Failure in PH?

I’m Aware That I’m Rare: the phaware® podcast
Episode 500- Jason Weatherald, MD

In our 500th episode, Dr. Jason Weatherald, a pulmonologist at the University of Alberta in Canada, discusses a project called CRAVE (Canadian Right Ventricular Failure Adaptive Platform) to address the lack of treatments for right heart failure in patients with pulmonary hypertension.

He explains that platform trials, which allow for multiple interventions to be tested simultaneously, are more efficient and offer a higher chance of receiving a potential therapy compared to traditional clinical trials.

Dr. Weatherald emphasizes the importance of patient involvement in research and highlights the use of phaware’s HeartWorks mobile app, which allows patients to measure their walking distance at home, as a potential endpoint in the trial.

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Why the Physician-Patient Relationship Matters in Clinical Trials

I’m Aware That I’m Rare: the phaware® podcast
Episode 493 - John Kingrey, MD and Nicole Fitzgerald

John Kingrey, MD, Director of the INTEGRIS Pulmonary Hypertension (PH) Center of Oklahoma and PH patient, Nicole Fitzgerald, discuss the importance of the physician-patient relationship as it relates to participation in clinical trials including the Phase 2 TORREY Study (now the Phase 3 PROSERA Study). #GossamerBioPartner #sponsored

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