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

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

phaware global association
Pulmonary Hypertension
Pulmonary Arterial Hypertension
Clinical Trials
Patient Advocacy
Mental Health
Interstitial Lung Disease
Advocacy
Chronic Thromboembolic Pulmonary Hypertension
Methamphetamine
Support Groups
Chronic Illness
Lung Transplant
Hereditary Hemorrhagic Telangiectasia
Covid-19
Scleroderma
Idiopathic Pulmonary Arterial Hypertension
Lung Transplantation
Patient Care
Genetic Mutations
Addiction Treatment

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 conversat... more

PublishesDailyEpisodes1165Founded9 years ago
Number of ListenersCategories
MedicineHealth & Fitness

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

Latest Episodes

From "Untreatable" to Life-Changing: The New Era of CTEPH Care What happens when patients are told everything looks "normal" but they still can't breathe? Dr. Jenny Yang explains how new testing and team-based care are solving one of pulmonary medici... more

From "Untreatable" to Life-Changing: The New Era of CTEPH Care What happens when patients are told everything looks "normal" but they still can't breathe? Dr. Jenny Yang explains how new testing and team-based care are solving one of pulmonary medici... more

YouTube

Why "The Walking Guy" Trusts His Therapist as Much as His Cardiologist For PAH patient, Eric Borstein, walking started as a way to survive medication side effects. Now, it has become a way to survive himself. Each step pulling "EB" further from an IC... more

Why "The Walking Guy" Trusts His Therapist as Much as His Cardiologist For PAH patient, Eric Borstein, walking started as a way to survive medication side effects. Now, it has become a way to survive himself. Each step pulling "EB" further from an IC... more

YouTube

Don't Let PH Ground You: A Real-World PH Travel Playbook For Nicole Dempsey, travel has always meant freedom. After being diagnosed with pulmonary hypertension, that freedom suddenly felt fragile. Nicole shares how she continues to explore the world,... more

Don't Let PH Ground You: A Real-World PH Travel Playbook For Nicole Dempsey, travel has always meant freedom. After being diagnosed with pulmonary hypertension, that freedom suddenly felt fragile. Nicole shares how she continues to explore the world,... more

YouTube

He Sent 100 Emails to Save His Wife… Only 3 Doctors Answered

From a devastating diagnosis to a lung transplant that changed everything, Florin Dumitrescu shares how mindset, persistence, and community carried his family through their darkest momen... more

He Sent 100 Emails to Save His Wife… Only 3 Doctors Answered From a devastating diagnosis to a lung transplant that changed everything, Florin Dumitrescu shares how mindset, persistence, and community carried his family through their darkest moment a... more

YouTube

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Recent Guests

Florin Dumitrescu
PH patient and advocate sharing his family's journey from Romania to Austria for a lung transplant
Episode: Episode 571 - Florin Dumitrescu
Terrie Keplinger
PH patient sharing her journey and advocacy work
PH patient
Episode: Episode 570 - Terrie Keplinger
Rey Adam Rodriguez
Pulmonary arterial hypertension patient sharing his journey
Self/PH community
Episode: Episode 569 - Rey Adam Rodriguez
Nicholas Kolaitis
Pulmonologist specializing in lung transplantation and pulmonary hypertension
University of California, San Francisco
Episode: Episode 567 - Dr. Nicholas Kolaitis
Lala Juarez
PH patient and support group leader
Northern Utah PH support group
Episode: Episode 566 - Lala Juarez
Angela Brown
PH patient sharing her diagnosis journey and daily management
Episode: Episode 565 - Angela Brown
Dr. Khushboo Goel
Pulmonary hypertension specialist
Cedars-Sinai
Episode: Episode 563 - Khushboo Goel, MD
Eric Borstein
Pulmonary arterial hypertension patient and advocate
Episode: Episode 536 - Eric Borstein
Rodolfo Estrada
Pulmonologist at UT Health San Antonio and leads the pulmonary hypertension program.
UT Health San Antonio
Episode: Episode 523 - Rodolfo Estrada, MD

Talking Points

Recent interactions between the hosts and their guests.

Episode 563 - Khushboo Goel, MD
Q: What inspired you to revitalize the PH support groups?
I wanted to make PH information and community resources more accessible beyond the clinic, leveraging mentorship and the PHA network to create a space where patients, families, and caregivers can learn, share experiences, and feel less isolated.
Episode 536 - Eric Borstein
Q: Can you tell me a little bit about how in your brain you go from this selfish to selfless role?
Helping others came naturally to me due to my philanthropic background and instinct to give back.

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Frequently Asked Questions About This Podcast

What is This Podcast about and what kind of topics does it cover?

This program centers on pulmonary hypertension (PH), weaving patient journeys, caregiver perspectives, and professional insights to illuminate diagnosis, treatment, and advocacy. Across episodes, topics span from genetic factors and rare TBX4-related conditions to advances in neonatal care, telehealth, artificial intelligence in diagnosis, and emerging therapies. A notable throughline is patient and family advocacy, collaboration across medical specialties, and the role of patient support networks in accelerating research and improving care. Standout elements include deeply personal caregiver and patient narratives, the international scope of PH discussions, and emphasis on actionable pathways for awareness, early diagnosis, and better outc... more

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1. Dateline NBC
2. Real Time with Bill Maher
3. 48 Hours
4. SmartLess
5. 20/20

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this podcast launched 9 years ago and published 1165 episodes to date. You can find more information about this podcast including rankings, audience demographics and engagement in our podcast database.

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What guests have appeared on this podcast?

Recent guests on this podcast include:

1. Florin Dumitrescu
2. Terrie Keplinger
3. Rey Adam Rodriguez
4. Nicholas Kolaitis
5. Lala Juarez
6. Angela Brown
7. Dr. Khushboo Goel
8. Eric Borstein

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