PODCAST

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

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

health & fitness medicine

All Episodes

Lisa Mielniczuk, MD - phaware® interview 501

I"m Aware That I"m Rare: the phaware® podcast ·

2024/12/31

Dr. Lisa Mielniczuk, a cardiologist at the Mayo Clinic in Rochester, shares her personal journey of becoming interested in pulmonary hypertension and the challenges faced by patients in accessing care. Dr. Mielniczuk emphasizes the importance of building connections with patients and involving them in decision-making. She discusses the CRAVE study, which aims to test novel and repurposed therapies for right heart failure using a platform trial design. She highlights the importance of patient

12:48

Episode 501 - Lisa Mielniczuk, MD

I"m Aware That I"m Rare: the phaware® podcast ·

2024/12/30

Jason Weatherald, MD - phaware® interview 500

I"m Aware That I"m Rare: the phaware® podcast ·

2024/12/24

In our 500th episode, Dr. Jason Weatherald, a pulmonologist at the University of Alberta in Canada, discusses a project called CRAVE (Canadian Right Ventricular Failure Adaptive Platform) to address the lack of treatments for right heart failure in patients with pulmonary hypertension. He explains that platform trials, which allow for multiple interventions to be tested simultaneously, are more efficient and offer a higher chance of receiving a potential therapy compared to traditional clinical

09:04

Episode 500 - Jason Weatherald, MD

I"m Aware That I"m Rare: the phaware® podcast ·

2024/12/23

Tanya Stinson - phaware® interview 499

I"m Aware That I"m Rare: the phaware® podcast ·

2024/12/17

Tanya Stinson shares her journey of being diagnosed with pulmonary hypertension (PH) after persistent symptoms and misdiagnoses. Her struggle highlights the difficulty of finding the right diagnosis and the emotional toll of living with a rare, chronic disease. Tanya’s experience underlines the fear, mental challenges, and hope intertwined in navigating PH, inspiring others to seek support and find solace in community, showing that even in isolation, they are not alone. My name is Tanya Stinson

09:50

Episode 499 - Tanya Stinson

I"m Aware That I"m Rare: the phaware® podcast ·

2024/12/16

Hall Skaara (Bel Air Center) - phaware® interview 498

I"m Aware That I"m Rare: the phaware® podcast ·

2024/12/10

Hall Skaara, a resilient PH patient and founder of the Norwegian Association for Pulmonary Hypertension, recounts his 19-year journey living with idiopathic pulmonary hypertension. He shares how he transformed the challenges of the pandemic into an innovative opportunity by helping create the Bel Air Center, a virtual global PH community space. The Bel Air Center aims to foster global connections, support, and resources for patients, caregivers, and healthcare professionals. My name is Hall

05:53

Episode 498 - Hall Skaara (Bel Air Center)

I"m Aware That I"m Rare: the phaware® podcast ·

2024/12/09

Cynthia Neilson - phaware® interview 497

I"m Aware That I"m Rare: the phaware® podcast ·

2024/12/03

Cynthia Neilson shares her journey as a mother raising her daughter Claire, who was diagnosed with pulmonary arterial hypertension (PAH) at a young age. Cynthia recounts the challenges she faced navigating the medical system, the emotional toll of dealing with an unexpected diagnosis, and the difficulties of balancing family life while ensuring her daughter received the best possible care. Cynthia emphasizes the value of connection, resilience, and advocacy for families dealing with rare diseases

09:52

Episode 497 - Cynthia Neilson

I"m Aware That I"m Rare: the phaware® podcast ·

2024/12/02

Natalie Roy - phaware® interview 496

I"m Aware That I"m Rare: the phaware® podcast ·

2024/11/26

Natalie Roy is a double lung transplant survivor living in Canada. She was diagnosed with pulmonary arterial hypertension (PAH) in 2005 and received her transplant in 2017. . After her successful transplant seven years ago, Natalie experienced a difficult initial recovery but felt amazing once she started healing. The first two years were cautious, but she was able to achieve many milestones she never thought possible, including getting married, playing sports, and changing careers. My name’s

10:21

Episode 496 - Natalie Roy

I"m Aware That I"m Rare: the phaware® podcast ·

2024/11/25

Maureen Harper - phaware® interview 495

I"m Aware That I"m Rare: the phaware® podcast ·

2024/11/19

Maureen Harper, a CTEPH patient from Canada, shares her journey with this rare condition. She initially thought she had an infection in her leg, but further tests revealed enlarged pulmonary arteries and multiple blood clots in her lungs. After being diagnosed with pulmonary hypertension, she underwent a complex surgery in Toronto to attempt to remove the clots. Maureen continues to work full-time as a pharmacy technician, remains active with her family and Girl Guide unit, and maintains a positive

09:45

Episode 495 - Maureen Harper

I"m Aware That I"m Rare: the phaware® podcast ·

2024/11/18

Lynette Chambers - phaware® interview 494

I"m Aware That I"m Rare: the phaware® podcast ·

2024/11/12

Lynette Chambers, a 9-year PAH (pulmonary arterial hypertension) patient, has also been diagnosed with pulmonary fibrosis (PF). She shares her journey, from struggling with daily activities to being admitted to the hospital with severely low oxygen levels. Lynette discusses the emotional challenges of facing a terminal illness and the difficulty of balancing work and family time. Despite the hard reality, Lynette emphasizes the importance of gratitude, making others feel better, and being the

11:14

Episode 494 - Lynette Chambers

I"m Aware That I"m Rare: the phaware® podcast ·

2024/11/11

John Kingrey, MD and Nicole Fitzgerald - phaware®...

I"m Aware That I"m Rare: the phaware® podcast ·

2024/11/05

John Kingrey, MD, Director of the INTEGRIS Pulmonary Hypertension (PH) Center of Oklahoma and PH patient, Nicole Fitzgerald, discuss the importance of the physician-patient relationship as it relates to participation in clinical trials including the Phase 2 TORREY Study (now the Phase 3 PROSERA Study). #GossamerBioPartner #sponsored John Kingrey, MD: My name is John Kingrey. I’m the director of the Pulmonary Hypertension Center at INTEGRIS Health. I’m a pulmonologist in pulmonary hypertension in

25:06

Episode 493 - John Kingrey, MD and Nicole Fitzgerald

I"m Aware That I"m Rare: the phaware® podcast ·

2024/11/04

John Kingrey, MD, Director of the @integrishealth Pulmonary Hypertension (PH) Center of Oklahoma and PH patient, Nicole Fitzgerald, discuss the importance of the physician-patient relationship as it relates to participation in clinical trials including the Phase 2 TORREY Study (now the Phase 3 PROSERA Study). #GossamerBioPartner #sponsored Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story:

Kathy Downey - phaware® interview 492

I"m Aware That I"m Rare: the phaware® podcast ·

2024/10/29

Canadian patient, Kathy Downey, recounts her four-and-a-half-year journey with pulmonary hypertension (PH). Kathy shares the challenges of living with the condition, including reliance on high-flow oxygen and the emotional toll it has taken. Despite these obstacles, she has become a passionate advocate, educating others about PH and serving as an ambassador for PHA Canada. Throughout, Kathy highlights the crucial support from her husband and the difficulties caregivers face. My name is Kathy

14:55

Episode 492 - Kathy Downey

I"m Aware That I"m Rare: the phaware® podcast ·

2024/10/28

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

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