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Episode 454 - Linda Wimmer

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

Release Date: 02/05/2024

Jason Weatherald, MD - phaware® interview 500 show art 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 show art 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 show art 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 show art 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 show art 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) show art 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 show art 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 show art 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 show art 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....

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Episode 496 - Natalie Roy show art Episode 496 - Natalie Roy

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. Learn more about pulmonary hypertension trials at . Engage for a cure: #phaware Share your story: Like,...

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More Episodes

New Jersey patient, Linda Wimmer, shares her experience with idiopathic pulmonary arterial hypertension. Linda discusses the various medications and lifestyle changes she has had to make to manage her condition. She also mentions dealing with depression and anxiety, as well as the challenges of accepting help from others. 

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: [email protected]