I'm Aware That I'm Rare: The Phaware® podcast

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

51:57

On the Season 2 debut of Lost Cultures: Living Legacies , we travel to Bermuda, an Atlantic island whose history spans centuries and continents. Once uninhabited, Bermuda became a vital stop in transatlantic trade, a maritime stronghold, and a cultural crossroads shaped by African, European, Caribbean, and Native American influences. Guests Dr. Kristy Warren and Dr. Edward Harris trace its transformation from an uninhabited island to a strategic outpost shaped by shipwrecks, colonization, the transatlantic slave trade, and the rise and fall of empires. Plus, former Director of Tourism Gary Phillips shares the story of the Gombey tradition, a vibrant performance art rooted in resistance, migration, and cultural fusion. Together, they reveal how Bermuda’s layered past continues to shape its people, culture, and identity today. You can also find us online at ⁠travelandleisure.com/lostcultures Learn more about your ad choices. Visit podcastchoices.com/adchoices…

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

Del

Serier hjem•Feed

Fetch error

Hmmm there seems to be a problem fetching this series right now. Last successful fetch was on May 31, 2025 07:56 (3d ago)

What now? This series will be checked again in the next day. If you believe it should be working, please verify the publisher's feed link below is valid and includes actual episode links. You can contact support to request the feed be immediately fetched.

I'm Aware That I'm Rare: the phaware® podcast is devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. 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

526 episoder

0-10 subscribers

updated for 8 dage siden

Del

Serier hjem•Feed

Fetch error

Hmmm there seems to be a problem fetching this series right now. Last successful fetch was on May 31, 2025 07:56 (3d ago)

526 episoder

Alle episoder

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

1
Episode 522 - Marc Simon, MD 32:15

for 8 dage siden32:15

32:15

Decoding Pulmonary Hypertension: Echo and Cath Insights for Pulmonologists. Dr. Marc Simon shares his expertise on diagnosing pulmonary hypertension, emphasizing echocardiographic markers, right heart catheterization pitfalls, and risk stratification with the H2FPEF score. His insights help clinicians refine their diagnostic approach for better patient outcomes. This Special Edition episode is sponsored by Liquidia . View PDF Slides here . Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials . Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com . #phawareMD #PHILD @Liquidia_Corp @UCSFCardiology @MarcSimonMD @CalThoracic…

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

1
Episode 521 - Jean M. Elwing, MD 6:13

for 15 dage siden6:13

6:13

Dr. Jean Elwing, a leading expert in pulmonary hypertension, discusses groundbreaking advancements in treating pulmonary hypertension associated with interstitial lung disease (PH-ILD). For years, patients with this condition had limited treatment options beyond oxygen therapy and symptom management. However, recent studies have introduced new hope, showing improved patient outcomes and quality of life. Dr. Elwing emphasizes the importance of early diagnosis, ongoing research, and clinical trial participation in pushing the field forward. This Special Edition episode is sponsored by Gossamer Bio and Pulmovant . Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials . Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com . #phawareMD #PHILD @uc_health @ElwingJean @GossamerBio #Pulmovant @accpchest #PHOCUSstudy #PROSERAstudy…

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

1
Episode 520 - Seth Hall, MBA, RRT 11:26

for 22 dage siden11:26

11:26

Seth Hall, MBA, RRT, takes listeners on a journey through the past, present, and future of inhaled therapies. Discover how these treatments have evolved, the life-changing benefits they offer, and the revolutionary technologies that could redefine outcomes for PAH and PH-ILD patients. This Special Edition episode is sponsored by Liquidia . Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials . Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com . #phawareMD #PHILD @Liquidia_Corp #PRINTTechnology…

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

1
Episode 519 - Richard Channick, MD 5:46

for 29 dage siden5:46

5:46

Dr. Richard Channick, dives into the evolving world within pulmonary hypertension -- interstitial lung disease (PH-ILD). He sheds light on why early diagnosis matters and how new therapies are transforming care. Learn about the latest FDA-approved treatment and what’s on the horizon. This Special Edition episode is sponsored by Gossamer Bio and Pulmovant . Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials . Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com . #phawareMD #PHILD @UCLAHealth @GossamerBio # Pulmovant @accpchest #PHOCUSstudy #PROSERAStudy…

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

1
Episode 518 - Ioana Preston, MD 9:24

for 5 weeks siden9:24

9:24

Dr. Ioana Preston explores the emerging field of pulmonary hypertension associated with interstitial lung disease (PH-ILD). She discusses the growing recognition of PH-ILD, especially after the introduction of inhaled treprostinil as a treatment, and highlights the importance of early screening and diagnosis. Dr. Preston also delves into the challenges of treating rare diseases, the evolution of research, and the hope for future therapies that could significantly improve patients' lives. This insightful conversation sheds light on a critical yet often overlooked aspect of pulmonary care, urging clinicians to stay vigilant and informed about PH-ILD's complexities. This Special Edition episode is sponsored by Liquidia . Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials . Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com . #phawareMD #PHILD @Liquidia_Corp @LaheyHospital…

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

1
Episode 517 - Raj Parikh, MD, MPH 10:22

for 6 weeks siden10:22

10:22

Dr. Raj Parikh from Hartford Hospital discusses the development of the PH-ILD Detection tool, a screening tool designed to help detect pulmonary hypertension (PH) in patients with interstitial lung disease (ILD) at an early stage. Early detection is critical, as there is often a significant delay in diagnosis of PH in ILD patients, leading to worsened outcomes. This Special Edition episode is sponsored by Liquidia . Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials . Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com . #phawareMD @HartfordHealthC @Liquidia_Corp @teamphhope #PHILD…

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

1
Episode 516 - Ron Zolty, MD 10:48

for 7 weeks siden10:48

10:48

Dr. Ron Zolty delves into groundbreaking advancements in treating pulmonary arterial hypertension. From the historical use of vasodilators to the revolutionary promise of sotatercept and seralutinib, Dr. Zolty unpacks how science is moving closer to halting—and possibly even reversing—PAH. This Special Edition episode is sponsored by Gossamer Bio . Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials . Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com . #phawareMD @UNMCCOM @NebraskaMed @GossamerBio #clinicaltrial #PROSERA…

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

1
Episode 515 - Rajan Saggar, MD 11:52

for 8 weeks siden11:52

11:52

For decades, researchers have sought better treatments for pulmonary hypertension in interstitial lung disease, a condition that drastically impacts patients’ quality of life. In this episode, Dr. Rajan Saggar dives into the latest advancements, including new inhaled medications, upcoming clinical trials, and the push for more personalized treatment approaches. This Special Edition episode is sponsored by Gossamer Bio and Pulmovant. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials . Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com . #phawareMD #PHILD @UCLAHealth @GossamerBio @ Pulmovant #PROSERAstudy #clinicaltrial #PHOCUSstudy…

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

1
Episode 514 - Eric Austin, MD, MSCI 16:11

for 9 weeks siden16:11

16:11

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 www.phaware.global/clinicaltrials . Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com #phawareMD @VUMCDiscoveries @pphnet @VUMCchildren…

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

1
Episode 513 - Kristin Highland, MD 17:12

for 10 weeks siden17:12

17:12

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 for open communication between providers and patients to ensure individualized and preference-aligned care. 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: info@phaware.com #phawareMD @ClevelandClinic @CleClinicMD…

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

1
Episode 512 - Jimmy Ford, MD 13:55

for 11 weeks siden13:55

13:55

Jimmy Ford, MD discusses the 7th World Symposium on Pulmonary Hypertension and his work on the Exploring the Patient Perspective in PH Task Force. 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: info@phaware.com #phawareMD @UNCDeptMedicine…

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

1
Episode 511 - Hap Farber, MD 14:44

for 12 weeks siden14:44

14:44

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 www.phaware.global/clinicaltrials . Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com #phawareMD @teamphhope…

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

1
Episode 510 - Drs. Kevin and Heather Shannon 22:16

for 13 weeks siden22:16

22:16

Co-Founder and Board Member, Drs. Kevin and Heather Shannon share the inspiring story of Camp del Corazon — 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 will be honored at The 22nd Camp del Corazon Gala del Sol on April 5th, 2025 at the Skirball Center. Get your tickets or participate in the online auction here . #galadelsol #campdelcorazon #heartcamp #camplove PH Kiddos 7-17: Applications for Camp are open! Apply here . (Be sure to note Lucas Van Wormer in the application!) 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: info@phaware.com…

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

1
Episode 509 - Jen Cueva 13:28

for 14 weeks siden13:28

13:28

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 www.phaware.global/clinicaltrials . Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com . @PulmonaryNews…

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

1
Episode 508 - Stephen Gariepy 8:39

for 15 weeks siden8:39

8:39

Canadian resident, Stephen Gariepy, was diagnosed with Chronic Thromboembolic Pulmonary Hypertension (CTEPH) in 2018. After initially being active in senior hockey, his condition worsened, leading to difficulty breathing and performing daily tasks. Gariepy continues to live with this rare and terminal disease, adapting to the limitations it imposes on his daily life. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials . Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com . @phacanada…

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

1
Episode 507 - Jolie Lizana 15:19

for 16 weeks siden15:19

15:19

Jolie Lizana is a pulmonary hypertension (PH) survivor and advocate. Despite enduring severe heart failure and lengthy hospitalizations, Jolie credits her medical background, determination, and the love for her child for pushing her to survive and adapt. Jolie now raises awareness through her website, www.breathtakingawareness.com , and has contributed to creating EMS protocols for PH patients, showing her dedication to empowering others with hope and resources. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials . Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com .…

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

1
Episode 506 - Allison Feenstra 11:19

for 17 weeks siden11:19

11:19

Allison Feenstra shares her transformative journey from being an active, independent young woman to navigating life with pulmonary hypertension (PH). She recounts how a sudden blackout led to hospital visits and the discovery of the condition, stemming from complications related to prolonged bed rest and birth control medication. Allison candidly discusses how she underwent a significant surgery and persevered through a high-risk pregnancy, ultimately becoming a mother. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials . Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com . @phacanada…

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

1
Episode 505 - Jodi Berry 13:16

for 18 weeks siden13:16

13:16

On the 28th anniversary of her PH diagnosis, Jodi Berry shares her journey of living with pulmonary hypertension. Despite facing an initial prognosis of only a few years to live, Jodi’s determination and the support of her family, friends, and healthcare professionals helped her manage her condition while maintaining an active lifestyle. Over time, advancements in treatments and her proactive participation in clinical trials provided hope and improved her quality of life. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials . Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com . @phacanada…

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

1
Episode 504 - Janette Reyes, NP 9:51

for 19 weeks siden9:51

9:51

Nurse Practitioner, Janette Reyes, from the Pulmonary Hypertension Program at the Hospital for Sick Children shares her extensive experience caring for pediatric patients with pulmonary hypertension. Reyes discusses the unique challenges and developmental considerations involved in treating children from infancy through their teenage years, as they transition to adulthood. Reyes also touches on the emotional and social struggles these young patients face, such as bullying and anxiety, and highlights the role of the multidisciplinary team in supporting their mental well-being. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials . Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com . @phacanada…

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

1
Episode 503 - Jennifer Howard 8:49

for 20 weeks siden8:49

8:49

Jennifer Howard’s inspiring story is one of resilience and hope in the face of immense challenges. Diagnosed with idiopathic pulmonary arterial hypertension (IPAH) in July 2019 after a long and frustrating path to answers, Jennifer faced the daunting reality of living with a chronic illness requiring continuous IV medication through a pump. Despite the overwhelming nature of her diagnosis, Jennifer discovered an inner strength she never knew she had. With a focus on living life to the fullest, she learned to navigate both the bad days and the good, embracing moments that brought her happiness and refusing to let despair take root. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials . Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com . @phacanada…

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

1
Episode 502 - Kaitlyn Salonga 9:04

for 21 weeks siden9:04

9:04

Kaitlyn Salonga shares her journey of resilience and advocacy while living with pulmonary hypertension (PH). Kaitlyn recounts her fight for personal autonomy, including a successful battle to secure surgery for her reproductive health after initial denials due to weight and health concerns. Through her triumphs, she highlights the importance of advocating for oneself in the face of medical and societal challenges. Her story is a powerful testament to embracing one’s identity, breaking down stigma, and showing that life with PH can be fulfilling and bold. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials . Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com . @phacanada…

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

1
Episode 501 - Lisa Mielniczuk, MD 12:48

for 22 weeks siden12:48

12:48

Dr. Lisa Mielniczuk, a cardiologist at the Mayo Clinic in Rochester, shares her personal journey of becoming interested in pulmonary hypertension and the challenges faced by patients in accessing care. Dr. Mielniczuk emphasizes the importance of building connections with patients and involving them in decision-making. She discusses the CRAVE study, which aims to test novel and repurposed therapies for right heart failure using a platform trial design. She highlights the importance of patient involvement in the trial design and its upcoming feasibility study. 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: info@phaware.com @phacanada #phawareMD #HeartWorksApp…

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

1
Episode 500 - Jason Weatherald, MD 9:04

for 23 weeks siden9:04

9:04

In our 500th episode, Dr. Jason Weatherald, a pulmonologist at the University of Alberta in Canada, discusses a project called CRAVE (Canadian Right Ventricular Failure Adaptive Platform) to address the lack of treatments for right heart failure in patients with pulmonary hypertension. He explains that platform trials, which allow for multiple interventions to be tested simultaneously, are more efficient and offer a higher chance of receiving a potential therapy compared to traditional clinical trials. Dr. Weatherald emphasizes the importance of patient involvement in research and highlights the use of phaware's HeartWorks mobile app , which allows patients to measure their walking distance at home, as a potential endpoint in the trial. 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: info@phaware.com @phacanada #phawareMD #HeartWorksApp…

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

1
Episode 499 - Tanya Stinson 9:50

for 24 weeks siden9:50

9:50

Tanya Stinson shares her journey of being diagnosed with pulmonary hypertension (PH) after persistent symptoms and misdiagnoses. Her struggle highlights the difficulty of finding the right diagnosis and the emotional toll of living with a rare, chronic disease. Tanya’s experience underlines the fear, mental challenges, and hope intertwined in navigating PH, inspiring others to seek support and find solace in community, showing that even in isolation, they are not alone. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials . Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com . @phacanada…

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

1
Episode 498 - Hall Skaara (Bel Air Center) 5:53

for 25 weeks siden5:53

5:53

Hall Skaara, a resilient PH patient and founder of the Norwegian Association for Pulmonary Hypertension, recounts his 19-year journey living with idiopathic pulmonary hypertension. He shares how he transformed the challenges of the pandemic into an innovative opportunity by helping create the Bel Air Center , a virtual global PH community space. The Bel Air Center aims to foster global connections, support, and resources for patients, caregivers, and healthcare professionals. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials . Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com . @EuropePHA…

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

1
Episode 497 - Cynthia Neilson 9:52

for 26 weeks siden9:52

9:52

Cynthia Neilson shares her journey as a mother raising her daughter Claire, who was diagnosed with pulmonary arterial hypertension (PAH) at a young age. Cynthia recounts the challenges she faced navigating the medical system, the emotional toll of dealing with an unexpected diagnosis, and the difficulties of balancing family life while ensuring her daughter received the best possible care. Cynthia emphasizes the value of connection, resilience, and advocacy for families dealing with rare diseases. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials . Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com . @phacanada…

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

1
Episode 496 - Natalie Roy 10:21

for 27 weeks siden10:21

10:21

Natalie Roy is a double lung transplant survivor living in Canada. She was diagnosed with pulmonary arterial hypertension (PAH) in 2005 and received her transplant in 2017. . After her successful transplant seven years ago, Natalie experienced a difficult initial recovery but felt amazing once she started healing. The first two years were cautious, but she was able to achieve many milestones she never thought possible, including getting married, playing sports, and changing careers. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials . Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com . @phacanada…

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

1
Episode 495 - Maureen Harper 9:45

for 28 weeks siden9:45

9:45

Maureen Harper, a CTEPH patient from Canada, shares her journey with this rare condition. She initially thought she had an infection in her leg, but further tests revealed enlarged pulmonary arteries and multiple blood clots in her lungs. After being diagnosed with pulmonary hypertension, she underwent a complex surgery in Toronto to attempt to remove the clots. Maureen continues to work full-time as a pharmacy technician, remains active with her family and Girl Guide unit, and maintains a positive outlook, choosing to focus on the positives rather than dwell on the negatives. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials . Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com . @phacanada…

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

1
Episode 494 - Lynette Chambers 11:14

for 29 weeks siden11:14

11:14

Lynette Chambers, a 9-year PAH (pulmonary arterial hypertension) patient, has also been diagnosed with pulmonary fibrosis (PF). She shares her journey, from struggling with daily activities to being admitted to the hospital with severely low oxygen levels. Lynette discusses the emotional challenges of facing a terminal illness and the difficulty of balancing work and family time. Despite the hard reality, Lynette emphasizes the importance of gratitude, making others feel better, and being the best version of oneself. She finds strength in her family, especially her grandchildren, and strives to create lasting memories and make a positive impact on those around her. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials . Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com . @phacanada…

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

1
Episode 493 - John Kingrey, MD and Nicole Fitzgerald 25:06

for 30 weeks siden25:06

25:06

John Kingrey, MD, Director of the @integrishealth Pulmonary Hypertension (PH) Center of Oklahoma and PH patient, Nicole Fitzgerald, discuss the importance of the physician-patient relationship as it relates to participation in clinical trials including the Phase 2 TORREY Study (now the Phase 3 PROSERA Study ). #GossamerBioPartner #sponsored Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials . Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com .…

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

1
Episode 492 - Kathy Downey 14:55

for 31 weeks siden14:55

14:55

Canadian patient, Kathy Downey, recounts her four-and-a-half-year journey with pulmonary hypertension (PH). Kathy shares the challenges of living with the condition, including reliance on high-flow oxygen and the emotional toll it has taken. Despite these obstacles, she has become a passionate advocate, educating others about PH and serving as an ambassador for PHA Canada. Throughout, Kathy highlights the crucial support from her husband and the difficulties caregivers face. 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: info@phaware.com @phacanada…

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

1
Episode 491 - Sarah Stone 21:26

for 32 weeks siden21:26

21:26

Sarah Stone shares the story of her family's journey with rare medical conditions in North Central Minnesota. Sarah's life took a turn when her daughter began showing unusual symptoms, eventually diagnosed with pulmonary hypertension, a rare condition complicated by her family's genetic predisposition to HHT. As their medical challenges unfolded with two of her three children facing life-threatening conditions, Sarah discusses the trials of managing these complex issues while living in a remote area. She delves into the lessons learned, the importance of specialized medical care, and the determination to live life fully despite the circumstances. 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: info@phaware.com…

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

1
Episode 490 - Maria Morais 13:23

for 33 weeks siden13:23

13:23

Maria 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: info@phaware.com @phacanada…

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

1
Episode 489 - David Lake 10:33

for 34 weeks siden10:33

10:33

In this episode, David Lake a retired jet pilot, discusses his experience with pulmonary arterial hypertension, initially misdiagnosed as exercise-induced asthma. Lake also manages hemophilia, COPD, and irregular heartbeats, impacting his health significantly. Despite these challenges, he remains hopeful and active in his community and church. His story is a testament to resilience and the quest for better treatment through clinical trials. 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: info@phaware.com…

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

1
Episode 488 - Lori Myers 5:27

for 35 weeks siden5:27

5:27

Lori Myers, shares her experience living with VSD and Tetralogy of Fallot, which caused her to be born as a "blue baby" and have various health issues throughout her life. After multiple surgeries and diagnoses, she was eventually told she had pulmonary arterial hypertension (PAH). Despite the prognosis, Lori is now in her tenth year since the diagnosis. She emphasizes the importance of listening to one's own body and following medical advice. Lori finds strength in her family, particularly her grandchildren. 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: info@phaware.com…

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

1
Episode 487 - Sue Liss 12:19

for 36 weeks siden12:19

12:19

PAH patient and Chicago-area support group leader, Sue Liss, discusses her pulmonary arterial hypertension diagnosis. Sue is involved with multiple PH related advocacy groups. Through these groups, she offers support and guidance, particularly in navigating medication funding challenges and accessing the right care, emphasizing the importance of community and shared experiences in managing this rare disease. 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: info@phaware.com…

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

1
Episode 486 - Scott E. Olitsky, MD 8:51

for 37 weeks siden8:51

8:51

In this episode, Dr. Scott Olitsky, the Global Center of Excellence Outreach Director for Cure HHT , discusses hereditary hemorrhagic telangiectasia (HHT), a genetic disease characterized by abnormal blood vessel development. HHT can cause bleeding in various parts of the body, with nosebleeds being the most common symptom. In some cases, HHT can lead to the development of pulmonary arterial hypertension (PAH). Medications that dilate blood vessels can worsen bleeding in HHT patients. Dr. Olitsky shares his personal connection to HHT and PAH and highlights the efforts of Cure HHT to improve diagnosis and treatment options for patients. 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: info@phaware.com @curehht…

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

1
Episode 485 - Eric Borstein 11:10

for 38 weeks siden11:10

11:10

Eric Borstein, who lives with pulmonary arterial hypertension, is walking from Los Angeles to San Diego to raise funds and awareness for the benefit of Team PHenomenal Hope. On September 21st, 2020, while at home, he collapsed from massive right heart failure and almost died. On September 22nd, 2024, four years after his PH diagnosis, he begin his 120+ mile walk for patients living with pulmonary hypertension. Learn more about his journey and this amazing event at WhereIsEB.og . 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: info@phaware.com…

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

1
Episode 484 - Thekla McGinley 10:13

for 39 weeks siden10:13

10:13

In this episode, Thekla McGinley, a PAH patient and advocate, shares her journey with pulmonary arterial hypertension (PAH) and the changes she has witnessed in the treatment options and education for medical professionals. She emphasizes the importance of raising awareness and ensuring that patients have access to proper treatment. Thekla also discusses her role as a support group leader and encourages patients to communicate with their doctors to advocate for themselves in order to receive the best care. 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: info@phaware.com…

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

1
Episode 483 - Dr. Morris Salem 7:24

for 40 weeks siden7:24

7:24

Dr. Morris Salem is a pediatric congenital cardiologist and adult congenital heart disease specialist at Kaiser Permanente in Southern California. He takes care of patients of all ages, from fetuses to elderly individuals. Dr. Salem's primary focus is interventional cardiac catheterization, specifically the closure of holes in the heart. He also deals with pulmonary hypertension and collaborates with referring physicians throughout Southern California. Dr. Salem works within the Kaiser system, which provides care to all patients regardless of age, race, or financial abilities. 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: info@phaware.com…

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

1
Episode 482 - Claire Champion, MSN, APRN, CPNP 6:39

for 41 weeks siden6:39

6:39

Claire Champion is a nurse practitioner at Texas Children's Hospital, specializing in pulmonary hypertension. As a nurse practitioner, she has the opportunity to see some of the patients as outpatients, which allows her to witness positive outcomes and the resilience of children. She also highlights the need for nurses to have a support system to cope with the emotional toll of the job. Claire encourages families to be open about their ongoing issues so that the healthcare team can provide the necessary support. 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: info@phaware.com #phawareMD #PPHNet @PPHNet @TexasChildrens…

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

1
Episode 481 - Charles Burger, MD 9:26

for 42 weeks siden9:26

9:26

In this episode, Dr. Charles Burger, the medical director of the Pulmonary Vascular Center at Mayo Clinic in Jacksonville, Florida, discusses the importance of patient registries, specifically the Pulmonary Hypertension Association’s PHA Registry (PHAR) for pulmonary hypertension. This registry collects clinical information and surveys from patients to understand their characteristics, treatment options, and outcomes. The PHAR registry also provides opportunities for research on topics like social determinants of health and newly diagnosed patients. @CharlesBurgerMD @MayoClinic @PHAssociation 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: info@phaware.com #phawareMD…

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

1
Episode 479 - Claire Parker, MS, PNP, AC 11:47

for 44 weeks siden11:47

11:47

In this episode, Claire Parker, a pediatric nurse practitioner, discusses the results of a study that examined the prevalence of anxiety and depression among adolescents with pediatric pulmonary hypertension. The project aimed to incorporate mental health screening into the standard care for PH patients, similar to what is done for cystic fibrosis patients. The results showed that 52% of the patients had symptoms of anxiety and/or depression. The study also found that females were slightly more likely to have symptoms than males. The researchers hope to incorporate mental health screening into future care guidelines for pulmonary hypertension. 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: info@phaware.com #phawareMD #PPHNet @PPHNet…

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

1
Episode 478 - Tina Proulx 16:28

for 45 weeks siden16:28

16:28

Tina Proulx was diagnosed with pulmonary hypertension at the age of 19. She experienced difficulty breathing and chest pain, leading to a diagnosis of chronic thromboembolic pulmonary hypertension (CTEPH), a condition caused by blood clots in the lungs. Tina eventually underwent transplant and celebrated eight years post-transplant, surpassing the average lifespan post-transplant. Tina emphasizes the importance of advocating for oneself in the healthcare system and encourages others to trust their instincts and fight for their needs. 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: info@phaware.com @PHACANADA…

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

1
Episode 477 - Marilyn Hanft 9:51

for 46 weeks siden9:51