I'm Aware That I'm Rare: the phaware® podcast
Eric Austin, MD, MSCI discusses early detection among people who are at risk of pulmonary arterial hypertension (PAH), particularly those who would have genetic susceptibility, or who may have congenital heart disease, or who may have connective tissue disease or other features that would make them more at risk of developing pulmonary arterial hypertension than the rest of the population. My name is Dr. Eric Austin. I'm a physician and physician scientist at Vanderbilt University Medical Center. I direct the Pediatric Pulmonary Hypertension Program at Vanderbilt and have done so since 2012. I...
info_outlineI'm Aware That I'm Rare: the phaware® podcast
Eric Austin, MD, MSCI discusses early detection among people who are at risk of pulmonary arterial hypertension (PAH), particularly those who would have genetic susceptibility, or who may have congenital heart disease, or who may have connective tissue disease or other features that would make them more at risk of developing pulmonary arterial hypertension than the rest of the population. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story: #phawareMD
info_outlineI'm Aware That I'm Rare: the phaware® podcast
Kristin Highland, MD, from the Cleveland Clinic discusses the importance of shared decision-making and patient preferences when treating patients with pulmonary hypertension. Dr. Highland, emphasizes that the patient is the true expert on their own body and that it is crucial to understand their perspective when making treatment decisions. She highlights the need to consider factors beyond just clinical outcomes, such as side effects, costs, and the patient's ability to manage the therapy. She underscores the evolving role of patient-reported outcomes in medical decision-making and the need...
info_outlineI'm Aware That I'm Rare: the phaware® podcast
Kristin Highland, MD, from the Cleveland Clinic discusses the importance of shared decision-making and patient preferences when treating patients with pulmonary hypertension. Dr. Highland, emphasizes that the patient is the true expert on their own body and that it is crucial to understand their perspective when making treatment decisions. She highlights the need to consider factors beyond just clinical outcomes, such as side effects, costs, and the patient's ability to manage the therapy. She underscores the evolving role of patient-reported outcomes in medical decision-making and the need...
info_outlineI'm Aware That I'm Rare: the phaware® podcast
Jimmy Ford, MD discusses the 7th World Symposium on Pulmonary Hypertension and his work on the in PH Task Force. My name's Jimmy Ford. I work at the University of North Carolina at Chapel Hill where I direct the pulmonary hypertension program. I got into pulmonary hypertension when I was a pulmonary fellow about 17 years ago. At our institution, there was not really a formally organized program or cohort of patients being followed by a pulmonary hypertension specialist. Also at that time, there were a number of new therapeutics coming online and being developed, so it was a very exciting...
info_outlineI'm Aware That I'm Rare: the phaware® podcast
Jimmy Ford, MD discusses the 7th World Symposium on Pulmonary Hypertension and his work on the in PH Task Force. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage for a cure: #phaware Share your story: #phawareMD
info_outlineI'm Aware That I'm Rare: the phaware® podcast
Harrison "Hap" Farber, MD gives a recap of PHenomenal Hope 2024, emphasizing its patient-centered approach to pulmonary hypertension (PH) research. He highlights patient stories, particularly Eric Borstein's inspiring journey of recovery and advocacy, and underscores the importance of patient-provider collaboration. Additionally, he addresses challenges in PH care, such as inclusivity in clinical trials, the role of AI in medicine, and the complexities of treating patients with substance use disorders. I’m Hap Farber. I do pulmonary hypertension at TUFTS Medical Center in Boston. This is...
info_outlineI'm Aware That I'm Rare: the phaware® podcast
Harrison "Hap" Farber, MD gives a recap of PHenomenal Hope 2024, emphasizing its patient-centered approach to pulmonary hypertension (PH) research. He highlights patient stories, particularly Eric Borstein's inspiring journey of recovery and advocacy, and underscores the importance of patient-provider collaboration. Additionally, he addresses challenges in PH care, such as inclusivity in clinical trials, the role of AI in medicine, and the complexities of treating patients with substance use disorders. Learn more about pulmonary hypertension trials at . Follow us on social @phaware Engage...
info_outlineI'm Aware That I'm Rare: the phaware® podcast
Co-Founder and Board Member, Drs. Kevin and Heather Shannon share the inspiring story of — a transformative summer camp for children with heart disease. Hear how one patient’s journey ignited a movement to create a safe, empowering space where kids can embrace their scars, form lifelong friendships, and experience the joy of camp without limits. From the challenges of the first year to the life-changing moments that keep them going, the Shannons share how Camp del Corazon has touched countless lives and redefined what it means to live fully with a medical condition. The Shannon’s...
info_outlineI'm Aware That I'm Rare: the phaware® podcast
Co-Founder and Board Member, Drs. Kevin and Heather Shannon share the inspiring story of — a transformative summer camp for children with heart disease. Hear how one patient’s journey ignited a movement to create a safe, empowering space where kids can embrace their scars, form lifelong friendships, and experience the joy of camp without limits. From the challenges of the first year to the life-changing moments that keep them going, the Shannons share how Camp del Corazon has touched countless lives and redefined what it means to live fully with a medical condition. The Shannon’s...
info_outlineMaria Morias, a registered nurse from Canada, shares her journey of managing multiple autoimmune diseases, including her recent diagnosis of pulmonary arterial hypertension. Previously dealing with scleroderma, Raynaud's phenomenon, and a rare liver disease leading to a liver transplant, Maria's ongoing symptoms of shortness of breath were eventually linked to pulmonary hypertension. Her story reflects on the psychological impact of chronic illness and the empowerment gained from community support and self-advocacy.
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] @phacanada