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Episode 345 - Roham Zamanian, MD - Race Against PH

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

Release Date: 10/19/2020

Scott Fleetwood - phaware® interview 476 show art Scott Fleetwood - phaware® interview 476

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

Scott Fleetwood, a former pulmonary hypertension patient from Buffalo, New York, shares his journey with rare diseases. He initially experienced shortness of breath while playing hockey and was later diagnosed with pulmonary hypertension and scleroderma. Scott received a double lung transplant in 2017. He discusses the initial fear he felt upon learning about his condition and the importance of finding a doctor you trust and following their instructions. He acknowledges the challenges and risks associated with lung transplants but highlights the positive outcomes he has experienced, such as...

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Episode 476 - Scott Fleetwood show art Episode 476 - Scott Fleetwood

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

Scott Fleetwood, a former pulmonary hypertension patient from Buffalo, New York, shares his journey with rare diseases. He initially experienced shortness of breath while playing hockey and was later diagnosed with pulmonary hypertension and scleroderma. Scott received a double lung transplant in 2017. He discusses the initial fear he felt upon learning about his condition and the importance of finding a doctor you trust and following their instructions. He acknowledges the challenges and risks associated with lung transplants but highlights the positive outcomes he has experienced, such as...

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Robert Frantz, MD - phaware® interview 475 show art Robert Frantz, MD - phaware® interview 475

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

Dr. Robert Frantz, a cardiologist at the Mayo Clinic, discusses current and upcoming clinical research in pulmonary arterial hypertension (PAH). He emphasizes the low participation rate of PAH patients in clinical trials and encourages patients to consider participating, as it not only benefits themselves but also helps advance medical knowledge. I am Dr. Robert Frantz. I'm a cardiologist at the Mayo Clinic in Rochester, Minnesota and Director of the Pulmonary Hypertension Clinic there. Today, I'd like to talk a little bit about what's in the pipeline in clinical research in pulmonary...

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Episode 475 - Robert Frantz, MD show art Episode 475 - Robert Frantz, MD

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

In this episode, Dr. Robert Frantz, a cardiologist at the Mayo Clinic, discusses current and upcoming clinical research in pulmonary arterial hypertension (PAH). He emphasizes the low participation rate of PAH patients in clinical trials and encourages patients to consider participating, as it not only benefits themselves but also helps advance medical knowledge.    Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure:  #phaware Share your story:  #phawareMD 

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Amy Gietzen - phaware® interview 474 show art Amy Gietzen - phaware® interview 474

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

Amy Gietzen, a patient diagnosed with systemic scleroderma, shares her journey and experiences living with the disease. She discusses her initial symptoms, the shock of the diagnosis, and the lack of information and resources available at the time. Despite facing numerous challenges, including pulmonary fibrosis and pulmonary arterial hypertension, Amy maintains a positive outlook and a determination to be an exception to the prognosis. She emphasizes the importance of education, self-advocacy, and being proactive in managing one's health.  Learn even more about Nola and PAH at ....

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Episode 474 - Amy Gietzen show art Episode 474 - Amy Gietzen

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

Amy Gietzen, a patient diagnosed with systemic scleroderma, shares her journey and experiences living with the disease. She discusses her initial symptoms, the shock of the diagnosis, and the lack of information and resources available at the time. Despite facing numerous challenges, including pulmonary fibrosis and pulmonary arterial hypertension, Amy maintains a positive outlook and a determination to be an exception to the prognosis. She emphasizes the importance of education, self-advocacy, and being proactive in managing one's health.  Learn even more about Nola and PAH at ....

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Alvin Rocha, MSN RN CPN PHN - phaware® interview 473 show art Alvin Rocha, MSN RN CPN PHN - phaware® interview 473

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

Alvin Rocha is a nurse care manager and pulmonary hypertension coordinator at Children's Hospital Los Angeles. He manages PH patients from birth to early adulthood. His main goal is to prepare these patients for the transition into the adult world. He is excited about the advancements in therapies and clinical trials and looks forward to attending the to learn more ways to help the patients and families he cares for.  My name's Alvin Rocha. I am the nurse care manager or the pulmonary hypertension coordinator at Children's Hospital Los Angeles. I've been doing this for about six or...

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Episode 473 - Alvin Rocha MSN RN CPN PHN show art Episode 473 - Alvin Rocha MSN RN CPN PHN

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

Alvin Rocha is a nurse care manager and pulmonary hypertension coordinator at Children's Hospital Los Angeles. He manages PH patients from birth to early adulthood. His main goal is to prepare these patients for the transition into the adult world. He is excited about the advancements in therapies and clinical trials and looks forward to attending the to learn more ways to help the patients and families he cares for.  Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure:  #phaware Share your story:

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Dunbar Ivy, MD - phaware® interview 472 show art Dunbar Ivy, MD - phaware® interview 472

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

Dr. Dunbar Ivy, a pediatric cardiologist at the University of Colorado, discusses the upcoming where experts from around the world will gather to discuss the progress made and future directions. Dr. Ivy highlights the work of the pediatric pulmonary hypertension task force, which aims to develop expert opinions on various topics, including the role of different therapies for patients who have failed all available medical treatments. The task force also focuses on understanding genetic abnormalities and developmental lung disorders, defining pulmonary hypertension in neonates, and addressing...

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Episode 472 - Dunbar Ivy, MD show art Episode 472 - Dunbar Ivy, MD

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

In this episode, Dr. Dunbar Ivy, a pediatric cardiologist at the University of Colorado, discusses the upcoming , where experts from around the world will gather to discuss the progress made and future directions. Dr. Ivy highlights the work of the pediatric pulmonary hypertension task force, which aims to develop expert opinions on various topics, including the role of different therapies for patients who have failed all available medical treatments. The task force also focuses on understanding genetic abnormalities and developmental lung disorders, defining pulmonary hypertension in...

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More Episodes

Roham Zamanian, MD is the Director of the Adult Pulmonary Hypertension (PH) Program at Stanford University Medical Center.

In this episode, he discusses the 20h Annual Virtual Race Against PH 5K/Fun Run, taking place at Stanford on November 1st, 2020 #raph20virtual

Register for the 20th Annual Race Against PH 5K: med.stanford.edu/raceagainstph

Register to watch the LIVESTREAM event Sunday 11/1 @ 9am PT: 
https://us02web.zoom.us/webinar/register/WN_gu-7DZyuRIaNTFjRRMTd7w

Enter this week's Bubble Contest (Oct 19-23)

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 @PHatStanford