Luke Stockdale - phaware® interview 560
I'm Aware That I'm Rare: the phaware® podcast
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...
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Episode 560 - Luke Stockdale
I'm Aware That I'm Rare: the phaware® podcast
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...
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Drs. Matina Prapa and Olivier Danhaive - phaware® interview 559
I'm Aware That I'm Rare: the phaware® podcast
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 and Royal Brompton Hospital. I’ve been a geneticist for three years now as a...
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Episode 559 - Drs. Matina Prapa and Olivier Danhaive
I'm Aware That I'm Rare: the phaware® podcast
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 . Follow us on social @phaware Engage for a cure: #phaware #phawareMD Share your story: Like, Subscribe and Follow us: .
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Anton Morkin - phaware® interview 558
I'm Aware That I'm Rare: the phaware® podcast
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, . 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 child will die probably in the next week or month. They did not know how long he’d...
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Episode 558 - Anton Morkin
I'm Aware That I'm Rare: the phaware® podcast
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, . Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: .
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Gaurav Choudhary, MD - phaware® interview 557
I'm Aware That I'm Rare: the phaware® podcast
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 well as I'm the Director of Cardiovascular Research at Brown University Health. I got...
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Episode 557 - Gaurav Choudhary, MD
I'm Aware That I'm Rare: the phaware® podcast
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 . Follow us on social @phaware Engage for a cure: #phaware #phawareMD Share your story:
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Lenise Whitley - phaware® interview 556
I'm Aware That I'm Rare: the phaware® podcast
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 since 2012. I'm originally from New Jersey and I was diagnosed in 2012. Honestly, I had never...
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Episode 556 - Lenise Whitley
I'm Aware That I'm Rare: the phaware® podcast
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 . Follow us on social @phaware Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: ...
info_outlineBulgarian pulmonary hypertension patient Natalia Maeva is a founding member and current President of the Bulgarian Society of the patients with pulmonary hypertension.
In this episode, Natalia discusses her journey with PH migrating to Greece for treatment and to Austria for a double-lung transplant, her passion for PH awareness and being a positive voice for the Bulgarian PH community.
Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials