I'm Aware That I'm Rare: the phaware® podcast
Health & Wellness Podcasts
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
Location:
United States
Description:
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
Twitter:
@phaware
Language:
English
Contact:
8183953529
Email:
info@phaware.global
Episodes
Episode 546 - Jenny Yang, MD
11/11/2025
The One Type of PH You Can Actually Cure
Dr. Jenny Yang dives into the rare but life-changing world of CTEPH, the only form of pulmonary hypertension that may be curable. From early warning signs to surgical options, this episode explains why ruling out CTEPH should be step one for any PH diagnosis.
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 @UCSDHealth #CTEPH @JennyYangMD
Duration:00:13:10
Episode 545 - Victor Test, MD
11/4/2025
The Diagnosis Delay That's Still Hurting Patients
Despite better tools and more awareness, people with PH are still being diagnosed too late. Dr. Victor Test opens up about the biggest barrier in PH today: getting diagnosed on time. Learn why shortness of breath is often dismissed—and how both patients and doctors can work together to catch pulmonary hypertension earlier.
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 @accpchest @redraiderpulmcc
Duration:00:05:58
Episode 544 - LaRae Hacker
10/28/2025
How TBX4Life Is Fueling a Global Collaboration
LaRae Hacker never set out to become a rare disease advocate—but when her daughter’s TBX4 diagnosis left her feeling helpless, she found power in connection. Discover how TBX4Life became her anchor in uncertainty and why she believes parent-led advocacy is the key to progress in rare disease research.
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 @TBX4_Life
Duration:00:09:05
Episode 543 - Anthony Carrasco
10/21/2025
How I Survived Meth Addiction, Lung Failure, and Found Purpose
Anthony Carrasco was a meth addict by 15, and nearly dead by 35. Diagnosed with PH after years of drug use, his story spiraled from homelessness to hospice. But a double lung transplant and a deep surrender to recovery transformed everything.
This Special Edition Episode Sponsored by: Johnson & Johnson
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 @JNJInnovMed
Duration:00:15:28
Episode 542 - Brandon Jakubowski, MD
10/14/2025
Treating Meth-Associated PAH Without Judgment
Dr. Brandon Jakubowski takes us into the underrecognized world of stimulant-induced pulmonary arterial hypertension. From misdiagnoses to under-prescribing life-saving therapies, he lays out the systemic gaps and stigmas preventing patients from getting the care they need.
This Special Edition Episode Sponsored by: Johnson & Johnson
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 @JNJInnovMed @UTSWMedCenter
Duration:00:11:57
Episode 541 - Nicholas Kolaitis, MD
10/7/2025
The Face of Addiction Isn’t Who You Think It Is
Once thought to be a West Coast issue, methamphetamine-associated pulmonary hypertension is now a nationwide and global crisis. Dr. Nicholas Kolaitis reveals how building trust with meth associated-PAH patients can lead to incredible turnarounds, including sobriety, trial participation, and successful transplant.
This Special Edition Episode Sponsored by: Johnson & Johnson
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 @JNJInnovMed #PHawareMD @UCSFHospitals @LungTxptMD
Duration:00:14:45
Episode 540 - Peter J. Leary, MD
9/30/2025
How Stigma Blocks Meth-PAH Treatment and How to Stop It
Patients with methamphetamine-associated-PAH often arrive at clinics already carrying heavy shame. But shame shouldn’t be part of their medical history. In this compelling episode, Dr. Peter Leary explains how stigma—from both society and providers—can delay life-saving care. Learn how a change in mindset, language, and compassion can transform outcomes for a neglected and growing patient population.
This Special Edition Episode Sponsored by: Johnson & Johnson
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 @uwepidemiology @JNJInnovMed
Duration:00:18:27
Episode 539 - Vinicio de Jesus Perez, MD
9/23/2025
The Hidden Epidemic: Meth and PH
Meth-Associated PAH is on the rise across the United States, yet many patients are not receiving the treatment they need. Dr. Vinicio de Jesus Perez discusses the shifting demographics of meth users, the challenges of treating addiction in cardiopulmonary care, and the need for compassionate, stigma-free screening.
This Special Edition Episode Sponsored by: Johnson & Johnson
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
@PHatStanford @Viniciodjperez @JNJInnovMed
Duration:00:21:18
Episode 538 - John Kingrey, MD
9/16/2025
Dr. John Kingrey exposes the rising crisis of meth-associated pulmonary hypertension, a condition spreading fast across the U.S. He challenges misconceptions, highlights urgent research, and stresses the need for compassion in treating both PAH and addiction.
This Special Edition Episode Sponsored by: Johnson & Johnson
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. @integrishealth @teamphhope @JNJInnovMed #phawareMD
Duration:00:15:45
Episode 537 - Kari Gillmeyer, MD, MSC
9/9/2025
Delays in diagnosing and treating pulmonary hypertension (PH) can have life-altering consequences. In this episode, Dr. Kari Gillmeyer, discusses her groundbreaking study on PH care networks. She explores why so many patients experience delays, how geography and provider access play a role, and what can be done to improve timeliness of care.
This Special Edition Episode Sponsored by: Johnson & Johnson
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. @VABostonHC @The_BMC @JNJInnovMed
Duration:00:13:08
Episode 536 - Eric Borstein
9/2/2025
A 200 Mile Journey from LA to San Diego to Raise Awareness for PH
When Eric Borstein collapsed in his bedroom in 2020, doctors gave him just months to live. Instead, he fought back with walking, mental health, and the support of his community. Now, he’s leading a movement, raising hundreds of thousands for pulmonary hypertension research, and walking 200 miles down the California coast to prove hope has no limits.
Learn more about the 2 Annual Where is EB? 5K Walk and Fundraiser September 7, 2025
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 @where_is_eb @DJLisaFoxx
Duration:00:23:26
Episode 535 - Akshay Muralidhar, MD
8/26/2025
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.
This Special Edition Episode Sponsored by: Johnson & Johnson
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 @JNJInnovMed
Duration:00:13:52
Episode 534 - Raj Parikh, MD, MPH
8/19/2025
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.
This Special Edition Episode Sponsored by: Johnson & Johnson
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 @HartfordHealthC @JNJInnovMed
Duration:00:14:46
Episode 533 - Robert Frantz, MD
8/12/2025
Dr. Robert Frantz breaks down the key metrics behind risk stratification—functional class, six-minute walk distance, and brain natriuretic peptide levels—and explains how they shape treatment plans. He also explores the role of echocardiography, right heart catheterization, and cutting-edge therapies in improving patient outcomes.
Read the proceedings of the Task Force on Risk Stratification from the Seventh World Symposium on Pulmonary Hypertension.
This Special Edition Episode Sponsored by: Johnson & Johnson
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 #RiskStratification @MayoClinic @MayoMedEd @TeamPHHope @JNJInnovMed
Duration:00:17:20
Episode 532 - Jean M Elwing, MD
8/5/2025
ICU & You: What Happens When Pulmonary Hypertension Turns Critical?
Pulmonary hypertension is already a complex condition, but what happens when it becomes life-threatening? Dr. Jean Elwing breaks down what patients and families can expect when someone with PH ends up in the ICU.
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
Duration:00:12:06
Episode 531 - John Granton, MD
7/29/2025
Dr. John Granton, a critical care and transplant physician at Toronto General Hospital, shares his journey in pulmonary hypertension and lung transplantation, detailing the groundbreaking advancements in transplant technology. He discusses the evolution of lung preservation methods, the challenges of chronic rejection, and the hope for longer-lasting transplants. With a passion for improving patient outcomes, Dr. Granton envisions a future where transplant becomes obsolete—replaced by treatments that cure underlying diseases.
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. @UHN @teamphhope #phawareMD #PHILD #transplant @phacanada
Duration:00:10:33
Episode 530 - First 5 Minutes®
7/22/2025
In this episode, Drs. Victor Test, Deborah Levine and Rodolfo Estrada discuss CHEST’s First 5 Minutes® program, which helps medical professionals build the skills that lead to a positive relationship with patients from the get-go. The goal is to improve patient care, shorten time to diagnosis for complex or rare diseases like pulmonary hypertension, and increase patient compliance and buy-in to their treatment plan.
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 @accpchest @UTHealthSA @PHatStanford @redraiderpulmcc
Duration:00:11:20
Episode 529 - Lia Barros, DNP and Tijana Milinic, MD
7/15/2025
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.
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. @uwepidemiology #phawareMD
Duration:00:18:40
Episode 528 - Lana Melendres-Groves, MD
7/8/2025
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.
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. @UNMHSC #phawareMD
Duration:00:15:05
Episode 527 - Roham Zamanian, MD, FCCP
7/1/2025
Dr. Roham Zamanian, discusses the concept of "disease modification" in the treatment of pulmonary hypertension. He describes how this idea emerged from discussions with colleagues about the future of pulmonary hypertension therapies, and the potential for treatments to impact the underlying disease process beyond just reducing pulmonary artery pressures.
This Special Edition Episode Sponsored by: Johnson & Johnson
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 @PHatStanford @docroham @JNJInnovMed
Duration:00:10:35