Episode 444 - Vinicio de Jesus Perez, MD
I'm Aware That I'm Rare: the phaware® podcast
Release Date: 11/27/2023
I'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_outlineI'm Aware That I'm Rare: the phaware® podcast
Jen Cueva, a pulmonary hypertension patient of almost two decades, discusses her diagnosis, her advocacy work, and how she uses writing to support the pulmonary hypertension community. My name is Jen Cueva. I from San Diego. I am a pulmonary hypertension patient of almost two decades. Throughout my journey with pulmonary hypertension, I have met some incredible healthcare providers, friends and family and loved ones and others in the pulmonary hypertension community. Before I was diagnosed with pulmonary hypertension, I was a hospice nurse. But, unfortunately, when I was diagnosed for a...
info_outlineI'm Aware That I'm Rare: the phaware® podcast
Jen Cueva, a pulmonary hypertension patient of almost two decades, discusses her diagnosis, her advocacy work, and how she uses writing to support the pulmonary hypertension community. Learn more about pulmonary hypertension trials at . Engage for a cure: #phaware Share your story: Like, Subscribe and Follow us: .
info_outlineIn this episode, Vinicio de Jesus Perez, MD discusses some of the most recent clinical developments in the field of pulmonary hypertension, highlighting new and ongoing clinical trials that are of great interest to the medical community as well as caregivers and patients looking forward to novel ways of treating their condition.
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] #phawareMD @PHatStanford @Viniciodjperez