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

365 Episodes

2 minutes | 2 months ago
I'm Aware That I'm Rare: the phaware® podcast Trailer
Are you #phaware?   EVERYBODY HAS A STORY. WHAT'S YOURS? phaware® wants to share your pulmonary hypertension story with our engaged global audience. Whether you are a patient, caregiver, or medical professional, we are enlisting PH community members from across the globe. We can record anyone... from anywhere... anytime.  Contact us at: www.phawarepodcast.libsyn.com/contact
10 minutes | 2 months ago
Episode 359 - Raymond Benza, MD
Dr. Raymond Benza is the Director for the Division of Cardiovascular Medicine at “THE” Ohio State University. He has been in practice for more than 20 years. In this episode, Dr. Benza discusses GossamerBio’s GB002 Phase 2 Study and explains what differentiates GB002 from other investigational drugs in development. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @GossamerBio
12 minutes | 2 months ago
Episode 358 - Roz Jones
Rosalind Marshall-Jones is an innovative speaker with more than 15 years of experience in the caregiving industry. She is a seasoned health care provider, who runs Jacksonville’s Best Caregivers, an organization that provides short and long-term health care. In this episode, Roz discusses the impact #covid19 has had on home healthcare from anxiety, depression to feelings of isolation. Learn more: thecaregivercafe.net Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials
17 minutes | 3 months ago
Episode 357: PAH Today - Moving Forward
SPECIAL EDITION: Moving Forward The PAH Initiative and United Therapeutics are excited to bring you the PAH Today National Broadcast Series. This series of virtual events is intended for adult patients with pulmonary arterial hypertension (PAH) and their caregivers. Advancements in the care and treatment of PAH are improving the lives of those impacted by this life-threatening disease. The National Broadcast Series will include insights and perspectives on today’s approaches to managing PAH from nationally recognized PAH healthcare providers. Join patients and caregivers across the nation to hear current considerations in the care of PAH. This is the 4th of 4 PAH Today broadcasts to learn about how you can be empowered to stay informed, motivated, and focused on your future. Presented by Dr. Lana Melendres-Groves the Director of the Pulmonary Hypertension Program at the University of New Mexico and PAH patients Denise B. & Lauren J. Learn more at: www.pahinitiative.com  Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials
11 minutes | 3 months ago
Episode 356 - David Harris
David F. Harris founded Insight & Measurement and provides research, training and speaking to the industry.  

In this episode, he discusses the qualitative and quantitative work that he conducts with PAH patients, so that people who get invited to be part of these types of studies have some understanding of what actually the process is like and what gets done with those results. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials
23 minutes | 3 months ago
Episode 355 - PAH Today: The Pathways To Treatment
SPECIAL EDITION: The Pathways To Treatment The PAH Initiative and United Therapeutics are excited to bring you the PAH Today National Broadcast Series. This series of virtual events is intended for adult patients with pulmonary arterial hypertension (PAH) and their caregivers. Advancements in the care and treatment of PAH are improving the lives of those impacted by this life-threatening disease. The National Broadcast Series will include insights and perspectives on today’s approaches to managing PAH from nationally recognized PAH healthcare providers. Join patients and caregivers across the nation to hear current considerations in the care of PAH. This is the 3rd of 4 PAH Today broadcasts to learn about how medications work to treat PAH and how finding the right combination of medications could help improve your symptoms. Presented by Dr. Lana Melendres-Groves the Director of the Pulmonary Hypertension Program at the University of New Mexico and Dr. Sean M. Studer Chief of Medicine at NYU-Woodhull Medical Center in Brooklyn, New York. Learn more at: www.pahinitiative.com  Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials
7 minutes | 3 months ago
Episode 354 - Sarah Sizemore
PAH patient Sarah Sizemore discusses being diagnosed with pulmonary hypertension at a young age in Denver, her family's decision to move from altitude and how positivity helps her face this disease. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials
13 minutes | 3 months ago
Episode 353 - PAH Today: Shape the Future
SPECIAL EDITION: How Decisions Today Can Shape the Future The PAH Initiative and United Therapeutics are excited to bring you the PAH Today National Broadcast Series. This series of virtual events is intended for adult patients with pulmonary arterial hypertension (PAH) and their caregivers. Advancements in the care and treatment of PAH are improving the lives of those impacted by this life-threatening disease. The National Broadcast Series will include insights and perspectives on today’s approaches to managing PAH from nationally recognized PAH healthcare providers. Join patients and caregivers across the nation to hear current considerations in the care of PAH. This is the second of 4 PAH Today broadcasts to learn about risk status, an important part of today's approach to treating PAH. You'll hear how risk status gives your healthcare provider a new way to assess your progress, and how it could help determine whether more can be done to improve your symptoms today and down the road. Presented by Dr. Lana Melendres-Groves the Director of the Pulmonary Hypertension Program at the University of New Mexico and Nurse Practitioner Melisa Wilson. Learn more at: www.pahinitiative.com  Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials
8 minutes | 3 months ago
Episode 352 - Krosby Myers, BSN, RN
Krosby Myers is a registered Nurse at UC San Diego Health System.  Though she works in their surgical oncology unit, Krosby had no idea that UCSD was a leading pulmonary hypertension center, until she was diagnosed with PH in her 37th week of pregnancy.  In this episode she discusses her journey to diagnosis and how her nursing perspective changed in light of becoming a patient. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials
20 minutes | 3 months ago
Episode 351 - PAH Today: Beyond the Basics
SPECIAL EDITION: Beyond the Basics The PAH Initiative and United Therapeutics are excited to bring you the PAH Today National Broadcast Series. This series of virtual events is intended for adult patients with pulmonary arterial hypertension (PAH) and their caregivers. Advancements in the care and treatment of PAH are improving the lives of those impacted by this life-threatening disease. The National Broadcast Series will include insights and perspectives on today’s approaches to managing PAH from nationally recognized PAH healthcare providers. Join patients and caregivers across the nation to hear current considerations in the care of PAH. This is the first of 4 PAH Today broadcasts to learn more about your symptoms and how your healthcare provider can use them to monitor your PAH. Presented by Dr. Lana Melendres-Groves the Director of the Pulmonary Hypertension Program at the University of New Mexico and Dr. George Ruiz Chief of Cardiology at MedStar Union Memorial Hospital. Learn more at: www.pahinitiative.com  Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials
8 minutes | 3 months ago
Episode 350 - Natalia Maeva
Bulgarian pulmonary hypertension patient Natalia Maeva is a founding member and current President of the Bulgarian Society of the patients with pulmonary hypertension. In this episode, Natalia discusses her journey with PH migrating to Greece for treatment and to Austria for a double-lung transplant, her passion for PH awareness and being a positive voice for the Bulgarian PH community. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials
7 minutes | 4 months ago
Episode 349 - Jessica Romero
Baby Jessica Romero was born October 26, 1983 in Denver, Colorado. Jessica was born 3 months premature, weighing one pound, 7 ounces. The Rocky Mountain News crowned her the “Miracle Baby of Colorado." Now, 37 years later Jessica discusses, her diagnosis, her outlook on a lung transplant and her commitment to pulmonary rehab. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials
15 minutes | 4 months ago
Episode 348 - George B. Mallory Jr., MD
George B. Mallory, MD is a pediatric pulmonologist at Texas Children's Hospital. In 2001, he joined the Baylor College of Medicine pediatric faculty and founded the TCH Lung Transplant Program.  In this episode, Dr. Mallory reflects on his 40 years of clinical practice and how the treatment of pulmonary hypertension has profoundly changed over the years. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials #phawareMD @BCM_PCCSM @TexasChildrens
14 minutes | 4 months ago
Episode 347 - Erica Huntzinger
Erica Huntzinger, MPH is an Associate Producer of the phaware® podcast series.   In this episode she discusses what it's like to be the daughter and family caregiver of a #pulmonaryhypertension patient, how she became involved in raising PH awareness, and her hopes for the future of this #raredisease community.  Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials
10 minutes | 4 months ago
Episode 346 - Jamie and Diana Cruz - Race Against PH
Jaime Cruz is a caregiver to his daughter, Diana, who is this year's Pediatric Courage Award Winner of the 20th Annual Virtual Race Against PH 5K/Fun Run, taking place November 1st, 2020. In this episode, they discuss Diana's pulmonary hypertension diagnosis and how she navigates this disease. #raph20virtual Register for the 20th Annual Race Against PH 5K: med.stanford.edu/raceagainstph Register to watch the LIVESTREAM event Sunday 11/1 @ 9am PT: https://us02web.zoom.us/webinar/register/WN_gu-7DZyuRIaNTFjRRMTd7w Enter this week's Costume Contest (Oct 26-30)  Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @PHatStanford
12 minutes | 4 months ago
Episode 345 - Roham Zamanian, MD - Race Against PH
Roham Zamanian, MD is the Director of the Adult Pulmonary Hypertension (PH) Program at Stanford University Medical Center. In this episode, he discusses the 20h Annual Virtual Race Against PH 5K/Fun Run, taking place at Stanford on November 1st, 2020 #raph20virtual Register for the 20th Annual Race Against PH 5K: med.stanford.edu/raceagainstph Register to watch the LIVESTREAM event Sunday 11/1 @ 9am PT: https://us02web.zoom.us/webinar/register/WN_gu-7DZyuRIaNTFjRRMTd7w Enter this week's Bubble Contest (Oct 19-23) Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @PHatStanford
12 minutes | 5 months ago
Episode 344 - Lindsey and Paige Doolan - Race Against PH
Lindsey Doolan is a caregiver to her daughter, Paige, who is a pediatric pulmonary hypertension patient.  In this episode, they discuss Paige's PH diagnosis and the importance of the 20th Annual Virtual Race Against PH 5K/Fun Run, taking place at Stanford on November 1st, 2020 #raph20virtual Register for the 20th Annual Race Against PH 5K: med.stanford.edu/raceagainstph Enter this week's Time For Burpees! Contest (Oct 12-16)  Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @PHatStanford
12 minutes | 5 months ago
Episode 343 - Yon Sung, MD - Race Against PH
Yon Sung, MD is a Clinical Assistant Professor of Pulmonary & Critical Care at Stanford University School of Medicine and specializes in the care of pulmonary hypertension patients. In this episode, she discusses the 20h Annual Virtual Race Against PH 5K/Fun Run, taking place at Stanford on November 1st, 2020 #raph20virtual Register for the 20th Annual Race Against PH 5K: med.stanford.edu/raceagainstph Enter this weeks Photo Contest (Oct 5-9) Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @PHatStanford
10 minutes | 5 months ago
Episode 342 - Emma Olson Jackson, MS, ARNP
Emma Olson Jackson is a Pediatric Nurse Practitioner at Seattle Children's Hospital. In this episode, she discusses her history in helping develop pediatric pulmonary hypertension programs across three different specialty centers. Emma also discusses the challenges that pediatric programs face in treating this disease. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phawareMD #ClinicalTrials @seattlechildren
10 minutes | 6 months ago
Episode 341 - Sheila Gujrathi, MD and Larry Zisman, MD phaware podcast
Sheila Gujrathi, MD and Larry Zisman, MD of Gossamer Bio discuss the development of an investigational new treatment for pulmonary arterial hypertension and their Phase 2 Clinical Trial for GB0002. Learn more about their Clinical Study of Inhaled GB002 for Treatment of WHO Group I Pulmonary Arterial Hypertension (PAH): https://clinicaltrials.gov/ct2/show/NCT03926793 Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phawareMD #ClinicalTrials @GossamerBio
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