Episode 355 - PAH Today: The Pathways To Treatment
I'm Aware That I'm Rare: the phaware® podcast
Release Date: 12/09/2020
Episode 565 - Angela Brown
I'm Aware That I'm Rare: the phaware® podcast
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 . Follow us on social @phaware Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: .
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Neal McDermott and Steve Mathai, MD - phaware® interview 564
I'm Aware That I'm Rare: the phaware® podcast
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. Neal McDermott: My name is Neal McDermott. I live in the mountains in West Virginia. I was originally diagnosed with pulmonary arterial hypertension in December of 2016. Prior to that, I...
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Episode 564 - Neal McDermott and Steve Mathai, MD
I'm Aware That I'm Rare: the phaware® podcast
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 . Follow us on social @phaware Engage for a cure: #phaware #phawareMD Share your story: Like, Subscribe and Follow us: ...
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Khushboo Goel, MD phaware® interview 563
I'm Aware That I'm Rare: the phaware® podcast
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 Care Medicine. I came to Cedars in route, multiple states in terms of my medical training....
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Episode 563 - Khushboo Goel, MD
I'm Aware That I'm Rare: the phaware® podcast
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 . Follow us on social @phaware Engage for a cure: #phaware #phawareMD Share your story: Like, Subscribe and Follow us: .
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Ripla Arora, PhD - phaware® interview 562
I'm Aware That I'm Rare: the phaware® podcast
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 Quantitative Health Science and Engineering. I’m a developmental biologist and a geneticist...
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Episode 562 - Ripla Arora, PhD
I'm Aware That I'm Rare: the phaware® podcast
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 . Follow us on social @phaware Engage for a cure: #phaware #phawareMD Share your story: Like, Subscribe and Follow us: .
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Jeffrey Whitsett, MD - phaware® interview 561
I'm Aware That I'm Rare: the phaware® podcast
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 Director of the Perinatal Institute. I’ve been there 50 years, taking care of newborns...
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Episode 561 - Jeffrey Whitsett, MD
I'm Aware That I'm Rare: the phaware® podcast
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 . Follow us on social @phaware Engage for a cure: #phaware #phawareMD Share your story: Like, Subscribe and Follow us: ...
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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...
info_outlineSPECIAL EDITION: The Pathways To Treatment
The PAH Initiative and United Therapeutics are excited to bring you the PAH Today National Broadcast Series. This series of virtual events is intended for adult patients with pulmonary arterial hypertension (PAH) and their caregivers.
Advancements in the care and treatment of PAH are improving the lives of those impacted by this life-threatening disease. The National Broadcast Series will include insights and perspectives on today’s approaches to managing PAH from nationally recognized PAH healthcare providers. Join patients and caregivers across the nation to hear current considerations in the care of PAH.
This is the 3rd of 4 PAH Today broadcasts to learn about how medications work to treat PAH and how finding the right combination of medications could help improve your symptoms.
Presented by Dr. Lana Melendres-Groves the Director of the Pulmonary Hypertension Program at the University of New Mexico and Dr. Sean M. Studer Chief of Medicine at NYU-Woodhull Medical Center in Brooklyn, New York. Learn more at: www.pahinitiative.com
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