Episode 501 - Lisa Mielniczuk, MD
I'm Aware That I'm Rare: the phaware® podcast
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 involvement in the trial design and its upcoming feasibility study. Learn more about pulmonary...
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Jason Weatherald, MD - phaware® interview 500
I'm Aware That I'm Rare: the phaware® podcast
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 trials. Dr. Weatherald emphasizes the importance of patient involvement in research and...
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Episode 500 - Jason Weatherald, MD
I'm Aware That I'm Rare: the phaware® podcast
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 trials. Dr. Weatherald emphasizes the importance of patient involvement in research and...
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Tanya Stinson - phaware® interview 499
I'm Aware That I'm Rare: the phaware® podcast
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. I’m from a really small town in Manitoba called Saint Eustache Manitoba. It’s about half an...
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Episode 499 - Tanya Stinson
I'm Aware That I'm Rare: the phaware® podcast
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. Learn more about pulmonary hypertension trials at . Engage for a cure: #phaware Share your...
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Hall Skaara (Bel Air Center) - phaware® interview 498
I'm Aware That I'm Rare: the phaware® podcast
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 , 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 Skaara. I am a patient. I was diagnosed with idiopathic pulmonary hypertension in 2005. So, I've been living...
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Episode 498 - Hall Skaara (Bel Air Center)
I'm Aware That I'm Rare: the phaware® podcast
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 , a virtual global PH community space. The Bel Air Center aims to foster global connections, support, and resources for patients, caregivers, and healthcare professionals. Learn more about pulmonary hypertension trials at . Engage for a cure: #phaware Share your story: Like,...
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Cynthia Neilson - phaware® interview 497
I'm Aware That I'm Rare: the phaware® podcast
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. My name is Cynthia Neilson. I live in Toronto Ontario, and I've been there 20 years now. I've...
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Episode 497 - Cynthia Neilson
I'm Aware That I'm Rare: the phaware® podcast
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. Learn more about pulmonary hypertension trials at . Engage for a cure: #phaware...
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Natalie Roy - phaware® interview 496
I'm Aware That I'm Rare: the phaware® podcast
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 Natalie Roy and I’m living in Victoria, BC, Canada. I am a double lung transplant survivor....
info_outlineLori Myers, shares her experience living with VSD and Tetralogy of Fallot, which caused her to be born as a "blue baby" and have various health issues throughout her life. After multiple surgeries and diagnoses, she was eventually told she had pulmonary arterial hypertension (PAH). Despite the prognosis, Lori is now in her tenth year since the diagnosis. She emphasizes the importance of listening to one's own body and following medical advice. Lori finds strength in her family, particularly her grandchildren.
Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware
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