I'm Aware That I'm Rare: the phaware® podcast – Details, episodes & analysis

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

phaware global association

Health & Fitness

Frequency: 1 episode/6d. Total Eps: 556

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

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http://www.phaware.global/phaware-podcast-app
762 shares
http://www.phaware.global/clinicaltrials
624 shares
http://www.phaware.global/donate
556 shares

http://www.twitter.com/phaware
254 shares
https://twitter.com/antidote_me
186 shares
https://twitter.com/PHACanada
68 shares

http://www.facebook.com/phaware
250 shares
https://www.facebook.com/PHenomenalmotorsports/
4 shares
https://www.facebook.com/groups/304235876377617/
2 shares

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RSS feed quality

Good

Score global : 78%

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Episode 553 - Jasmine Wells

Season 10 · Episode 11

mardi 30 décembre 2025 • Duration 13:16

You Can Grieve and Still Fight: Love, Loss, and Living with PAH

She cried for the life she lost. Then, she fought for the one she has. PAH patient, Jasmine Wells discusses what it really means to grieve the old you while finding purpose in the new. From navigating relationships, infections, and fear of transplant, to leading support groups and fighting misinformation.

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.global

Episode 552 - Kevin Allen

Season 10 · Episode 10

mardi 23 décembre 2025 • Duration 27:12

The Pulse of a Fighter: Survival, Stigma, and Shaking Up Healthcare

They told him he had months to live. He used them to rewrite the rules. Kevin Allen survived near-death, systemic medical neglect, and an invisible disability most physicians don't understand. Today, he's pushing policy, pressuring universities, and pioneering new models of PH patient-centered care.

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.global

Episode 543 - Anthony Carrasco

Season 10 · Episode 1

mardi 21 octobre 2025 • Duration 15:28

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

Episode 452 - Lia Barros, NP

Season 8 · Episode 17

lundi 22 janvier 2024 • Duration 14:24

Lia Barros, a nurse practitioner at the University of Washington, discusses the role of nurse practitioners in caring for patients with pulmonary hypertension. She emphasizes the importance of nurse practitioners in meeting the unique needs of patients with pulmonary hypertension and suggests that adopting collaborative care models can improve patient outcomes.

Episode 451 - Sam Rayner, MD

Season 8 · Episode 16

lundi 15 janvier 2024 • Duration 09:14

Dr. Sam Rayner is an assistant professor and pulmonary hypertension specialist at the University of Washington. In this episode, he discusses the different ways physicians can get involved in pulmonary hypertension research. He explains that he is a physician scientist, dividing his time between patient care and scientific research focused on PH.

Episode 450 - Harm Bogaard, MD

Season 8 · Episode 15

lundi 8 janvier 2024 • Duration 11:10

Harm Bogaard, MD, Ph.D., FAHA is a pulmonologist at the Amsterdam UMC. In this episode, he discusses the role of genetic testing in the treatment of patients with pulmonary hypertension at its role in clinical research.

Episode 449 - Sharon Tokonitz

Season 8 · Episode 14

jeudi 28 décembre 2023 • Duration 05:54

Six years ago, Canadian pulmonary hypertension patient Sharon Tokonitz was rushed to the hospital with a massive bilateral unprovoked pulmonary embolism. She discusses her road to recovery from being bedridden to returning to an active life thanks to pulmonary rehab.

Episode 448 - Saire Gonzalez, RN and Kimberly Hudson, RN

Season 8 · Episode 13

jeudi 21 décembre 2023 • Duration 10:37

Kimberly Hudson and Saire Gonzalez are registered nurses with CVS Specialty Pharmacy who work with patients with pulmonary hypertension (PH). They provide support, education, and guidance to patients who are newly diagnosed with PH and help them navigate their drug therapies and lifestyle changes. They also highlight the role of caregivers and the availability of support groups for both patients and caregivers. @CVSHealth

Episode 447 - Raymond L. Benza, MD

Season 8 · Episode 12

lundi 18 décembre 2023 • Duration 05:46

In this episode, Dr. Raymond Benza, a Professor of Medicine at the Icahn School of Medicine at Mount Sinai, discusses dual therapy in the treatment of pulmonary hypertension (PH) through the concept of risk stratification.

Episode 446 - Nancy Halnon, MD

Season 8 · Episode 11

lundi 11 décembre 2023 • Duration 18:26

In this episode, pediatric cardiologist, Nancy Halnon, MD, discusses treatment goals for pulmonary hypertension, the various routes of administration and the importance of using combination therapy to improve survival.