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 211 - Lori Heaton

11/29/2018
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Pulmonary hypertension caregiver and author, Lori Heaton discusses her daughter Maddie's twenty-year journey of courage and strength living with PH. Maddie conquered cancer and lived on to receive two separate lung transplants. Lori details wisdom learned being Maddie’s caregiver through hard-gained lessons which she calls "difficult blessings." Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us...

Duration:00:13:26

Episode 210 - Kristine Ritchie

11/26/2018
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Pediatric PH caregiver Kristine Ritchie discusses her son Brendan’s pulmonary hypertension diagnosis. Kristine talks about the importance of advocating for her child, the power of online support groups and struggle of navigating a new normal. 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:00:06:47

Episode 209 - Sonya Collins

11/22/2018
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Diagnosed with IPAH almost 16 years ago, Canadian Sonya Collins discusses spending about four years questioning her shortness of breath (SOB) and severe fluid retention. Sonya details why she became a PHA Canada Ambassador and how her short and long term goals have shifted over the years thanks to her PH therapies. 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,...

Duration:00:08:02

Episode 208 - Shannon Reitor

11/19/2018
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Pediatric PH caregiver Shannon Reitor discusses her son Adam’s pulmonary hypertension diagnosis. Shannon details lobbying the Canadian government, the challenge of navigating side-effects of unapproved treatments for children with PH and how Adam became the first child in Canada to go on IV therapy. 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,...

Duration:00:04:32

Episode 207 - Angela Michelle

11/15/2018
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Angela Michelle is a professional photographer and yoga instructor living in San Antonio, Texas. She was diagnosed with CTEPH in January 2018 after years of experiencing symptoms. Angela underwent PTE surgery in August of 2018 at UCSD. 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...

Duration:00:09:47

Episode 206 - Robert Frantz, MD

11/12/2018
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Robert P. Frantz is the director of the Mayo Pulmonary Hypertension Clinic, which has a robust referral practice of patients with pulmonary arterial hypertension. Dr. Frantz has served as the Mayo site PI on numerous multicenter trials in PH including the majority of trials resulting in FDA approved PH therapies. He also performs complex hemodynamic studies in the catheterization laboratory including right heart catheterizations for patients with pulmonary arterial hypertension and also...

Duration:00:10:09

Episode 205 - Jennifer Gendron

11/8/2018
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Canadian caregiver Jennifer Gendron has been working with the pulmonary hypertension community since 2003, when her son Braden was diagnosed at the age of five. She discusses Braden’s PH journey that ultimately led to him having a double-lung transplant at The Hospital for Sick Kids in September 2009. 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 &...

Duration:00:11:23

Episode 204 - Janette Reyes, NP

11/5/2018
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Janette Reyes, NP has provided comprehensive care for children with Pulmonary Hypertension at the Hospital for Sick Children since the development of the Pulmonary Hypertension Service in the year 2000. She is involved in research and strives to improve pediatric patients’ quality of life. Janette discusses Child to Adult Transition Guidelines specific to the pulmonary hypertension patient population. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never...

Duration:00:06:33

Episode 203 - Sam Bowker and Ken Porter

11/1/2018
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Sam Bowker is a pulmonary hypertension patient on triple therapy from Canada. Ken Porter is her partner and caregiver. They discuss Sam’s diagnosis and creative ways they work together to manage her PH treatment regimen. Learn more about pulmonary hypertension trials a 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:00:08:41

Episode 202 - Natalie Roy

10/29/2018
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Canadian Natalie Roy is a former pulmonary hypertension patient who received a double-lung transplant in September 2017. She discusses having an identity crisis post PH. Learn more about pulmonary hypertension trials a 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 #YoungwithPAH #LifeInPurple #PHUnited @PHACanada @antidote_me

Duration:00:06:40

Episode 201 - Brooke Paulin

10/25/2018
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Canadian Pulmonary Hypertension Patient, Brooke Paulin discusses her road to PH Diagnosis. Learn more about pulmonary hypertension trials a 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 #YoungwithPAH @PHACanada @antidote_me

Duration:00:07:12

Episode 200 - Iain Armstrong, PHA UK

10/22/2018
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In this episode, Chairman of PHA UK, Iain Armstrong talks about PHawareness Week 2018 (October 22-28), EmPHasis10 and the power of collaboration within the PH Community. 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 #phawareMD @antidote_me @PHA_UK #PHWeek18 #LetsTalkPH

Duration:00:05:47

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