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

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

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A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday. Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because early diagnosis and treatment can mean the difference between life and death. Topics range from the importance of early diagnosis and global PH awareness, to the impact of clinical trials to how patient support and advocacy are paramount to battling this disease. Learn more about PH at www.phaware.global

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday. Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because early diagnosis and treatment can mean the difference between life and death. Topics range from the importance of early diagnosis and global PH awareness, to the impact of clinical trials to how patient support and advocacy are paramount to battling this disease. Learn more about PH at www.phaware.global
More Information

Location:

United States

Description:

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday. Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because early diagnosis and treatment can mean the difference between life and death. Topics range from the importance of early diagnosis and global PH awareness, to the impact of clinical trials to how patient support and advocacy are paramount to battling this disease. Learn more about PH at www.phaware.global

Twitter:

@phaware

Language:

English

Contact:

8183953529


Episodes

Episode 199 - Darren Dempsey

10/18/2018
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Canadian Pulmonary Hypertension Caregiver Darren Dempsey discusses the impact rare disease has had on his family and how stress impacts the entire family. 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 @antidote_me @phacanada

Duration:00:03:18

Episode 198 - Marion Roth

10/15/2018
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Canadian Pulmonary Hypertension Patient, Marion Roth discusses the importance of clinical trials, fearlessly tackling her bucket list and educating the world about #phaware-ness. 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 @antidote_me @phacanada

Duration:00:06:52

Episode 197 - Kristen Wieneke

10/11/2018
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Kristen Wieneke is a long term pulmonary hypertension survivor. She was diagnosed in 2003 during open heart surgery to repair an ASD. She discusses the stigma that comes with rare disease, the importance of clinical trials and why patients must be their own advocate. 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:...

Duration:00:07:05

Episode 196 - Abby Sherwood

10/8/2018
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Abby Sherwood discusses navigating life with pulmonary hypertension on the 15th anniversary of her PH diagnosis. Learn more about pulmonary hypertension trials at www.phaware.global. 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 #pottsshunt #YoungwithPAH

Duration:00:06:10

Episode 195 - Laurie Witherwax

10/4/2018
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Laurie Witherwax is the Vice President of Project Management at Worldwide Clinical Trials, which provides drug development services from Early Phase and Bioanalytical Sciences, through Phase II, III and IV. In this episode, Laurie discusses the role of CROs (clinical research organizations). Laurie was the Program Director for global Phase III cardiovascular trials encompassing 38 countries across 620 sites, including 3,400 patients, and other trials involving complex and rare diseases. Her...

Duration:00:05:07

Episode 194 - Vinicio A de Jesus Perez, MD

10/1/2018
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In this episode, Dr. Perez discusses genetic markers in a population of Iberian gypsies, who are afflicted with a very severe form of pulmonary hypertension that is called pulmonary veno-occlusive disease. Vinicio de Jesus Perez, MD is Assistant Professor of Medicine (Pulmonary and Critical Care Medicine) at the Stanford Adult PH Clinic where he trains fellows pursuing careers in PH and IPF. Learn more about clinical trials at: www.phaware.global/clinicaltrials. Never miss an episode with...

Duration:00:08:08

Episode 193 - Jessica York

9/27/2018
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Jessica York is a pediatric pulmonary hypertension caregiver to her 6 year old daughter Haylee. In this episode she discusses Hay's diagnosis and the importance of pediatric PH research. Click here to visit Haylee's PHun Walk 4 Hay page. Learn more about clinical 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

Duration:00:02:51

Episode 192 - Tom Krohn

9/24/2018
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Tom Krohn is the Chief Development Officer at Antidote. In this episode, Tom details a collaboration between phaware global association® and Antidote Technologies to accelerate lung disease research. This partnership provides pharmaceutical companies with end-to-end clinical trial recruitment services through an extensive network of patients with chronic lung diseases. Tom is an experienced executive leader in multiple healthcare and IT settings including sub-Saharan Africa development, US...

Duration:00:10:03

Episode 191 - Maleen Fischer

9/20/2018
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At the age of three, Maleen Fischer was diagnosed with pulmonary hypertension and, as there was no treatment for this fatal disease at the time in Austria, doctors sent her home. Her life expectancy was only a few years. Now, 20 years later, Maleen discusses early diagnosis, the joy of graduating college and the importance of global awareness. Click here to learn more about Maleen's book: As If There Were No Tomorrow: Hope Springs Eternal. Learn more about pulmonary hypertension at...

Duration:00:09:59

Episode 190 - Victor F. Tapson, MD

9/17/2018
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Victor F. Tapson, MD discusses the PERT Consortium, a network of multidisciplinary pulmonary embolism response teams working to improve the care of pts w severe PE. The PERT Consortium intends to guide and influence pulmonary embolism (PE) care and research in institutions across the U.S. and will be the driving force behind increased survival rates and the future of PE treatment. Learn more about pulmonary hypertension at www.phaware365.global. Never miss an episode with the phaware®...

Duration:00:04:42

Episode 189 - Vallerie McLaughlin, MD

9/13/2018
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Vallerie McLaughlin, MD from Michigan Medicine's Cardiovascular Center explains the basics of clinical trials in part 2 of her discussion. Dr. McLaughlin is the Director of the Pulmonary Hypertension Program at the University of Michigan in Ann Arbor. She is a Fellow of the American College of Cardiology, American College of Chest Physicians, and American Heart Association (AHA). Dr. McLaughlin has been the Principal Investigator of several major clinical trials of drug therapies for...

Duration:00:11:17

Episode 188 - Vallerie McLaughlin, MD

9/10/2018
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Vallerie McLaughlin, MD from Michigan Medicine's Cardiovascular Center breaks down the different phases of clinical trials in part 1 of her discussion. Dr. McLaughlin is the Director of the Pulmonary Hypertension Program at the University of Michigan in Ann Arbor. She is a Fellow of the American College of Cardiology, American College of Chest Physicians, and American Heart Association (AHA). Dr. McLaughlin has been the Principal Investigator of several major clinical trials of drug...

Duration:00:07:17

Episode 187 - Beth DeCristofaro

9/6/2018
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Beth DeCristofaro is a pulmonary hypertension patient from Virginia. She discusses her diagnosis and involvement in clinical trial research. Beth is a married mother of two, and a former Hospice Chaplain. 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

Duration:00:08:00

Episode 186 - Alex Flipse

9/3/2018
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Alex Flipse was diagnosed with pulmonary hypertension on September 3, 1998. On the 20th anniversary of her diagnosis, Alex details her journey battling both depression and PH. Learn more about pulmonary hypertension at www.phaware365.global. 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 @flippymom

Duration:00:10:06

Episode 185 - Dunbar Ivy, MD

8/30/2018
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Dr. Dunbar Ivy discusses the work of the Pediatric Pulmonary Hypertension Network, (PPHNet) on the network's 10th anniversary. PPHNet is a network of clinical specialists, researchers, and centers bringing a collaborative and multidisciplinary approach to improving care for children with pulmonary vascular disease. Learn more about pulmonary hypertension at www.phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube...

Duration:00:03:42

Episode 184 - Roberta Keller, MD

8/27/2018
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Dr. Roberta Keller discusses the work of the Pediatric Pulmonary Hypertension Network, (PPHNet) on the networks 10th anniversary. PPHNet is a network of clinical specialists, researchers, and centers bringing a collaborative and multidisciplinary approach to improving care for children with pulmonary vascular disease. Learn more about pulmonary hypertension at www.phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram,...

Duration:00:10:10

Episode 183 - Alvin Rocha, RN

8/23/2018
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Alvin Rocha, RN discusses clinic visits in the outpatient setting and his role in the Pediatric Pulmonary Hypertension Program of Children’s Hospital Los Angeles (CHLA). Learn more about pulmonary hypertension at www.phaware365.global. 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 #phawareMD @ChildrensLA ‏

Duration:00:04:49

Episode 182 - Anna Brown, RN

8/20/2018
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Anna Brown, RN discusses pulmonary hypertension patients transitioning from pediatrics to adult program as well as the need for comprehensive palliative care that utilizes social workers and psychologists, and mental health providers. Anna is pediatric nurse practitioner at the Vanderbilt Children's Hospital. Learn more about pulmonary hypertension at www.phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube &...

Duration:00:07:33

Episode 181 - Victor F. Tapson, MD

8/16/2018
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Victor F. Tapson, MD from Cedars-Sinai discusses the different pathways that medical professionals and researchers utilize in treating pulmonary arterial hypertension patients. Learn more about pulmonary hypertension at www.phaware365.global. 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 #phawareMD

Duration:00:03:24

Episode 180 - Richard Channick, MD

8/13/2018
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Richard Channick, MD discusses the importance of clinical trials and how various approved pulmonary hypertension therapies work on specific pathways. Learn more about pulmonary hypertension at www.phaware365.global. 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 #phawareMD

Duration:00:05:07