Shows
I'm Aware That I'm Rare: the phaware® podcastEric Austin, MD, MSCI - Pulmonary HypertensionEric 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 @VUMCchildren2025-03-3116 min
I'm Aware That I'm Rare: the phaware® podcastKristin Highland, MD - Pulmonary HypertensionKristin 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...2025-03-2417 min
I'm Aware That I'm Rare: the phaware® podcastJimmy Ford, MD - Pulmonary HypertensionJimmy 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 @UNCDeptMedicine2025-03-1713 min
I'm Aware That I'm Rare: the phaware® podcastHap Farber, MD - Pulmonary HypertensionHarrison "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...2025-03-1014 min
I'm Aware That I'm Rare: the phaware® podcastDrs. Kevin and Heather Shannon - CHD & PHCo-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 Shann...2025-03-0322 min
I'm Aware That I'm Rare: the phaware® podcastLisa Mielniczuk, MD - Pulmonary HypertensionDr. 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...2024-12-3012 min
I'm Aware That I'm Rare: the phaware® podcastJason Weatherald, MD - Pulmonary Hypertension 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 p...2024-12-2309 min
I'm Aware That I'm Rare: the phaware® podcastKathy Downey - Pulmonary HypertensionCanadian 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 s...2024-10-2814 min
I'm Aware That I'm Rare: the phaware® podcastSarah Stone - Pulmonary HypertensionSarah 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...2024-10-2121 min
I'm Aware That I'm Rare: the phaware® podcastMaria Morais - Pulmonary HypertensionMaria 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 #phaware2024-10-1413 min
I'm Aware That I'm Rare: the phaware® podcastDavid Lake - Pulmonary HypertensionIn 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.com2024-10-0710 min
I'm Aware That I'm Rare: the phaware® podcastLori Myers - Pulmonary HypertensionLori 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 2024-09-3005 min
I'm Aware That I'm Rare: the phaware® podcastSue Liss - Pulmonary HypertensionPAH 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.com2024-09-2312 min
I'm Aware That I'm Rare: the phaware® podcastScott E. Olitsky, MD - Pulmonary Hypertension 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. ...2024-09-1608 min
I'm Aware That I'm Rare: the phaware® podcastEric Borstein - Pulmonary HypertensionEric 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 Enga...2024-09-0911 min
I'm Aware That I'm Rare: the phaware® podcastThekla McGinley - Pulmonary HypertensionIn 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...2024-09-0210 min
I'm Aware That I'm Rare: the phaware® podcastDr. Morris Salem - Pulmonary HypertensionDr. 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 s...2024-08-2607 min
I'm Aware That I'm Rare: the phaware® podcastClaire Champion - Pulmonary HypertensionClaire 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...2024-08-1906 min
I'm Aware That I'm Rare: the phaware® podcastCharles Burger, MD - Pulmonary HypertentionIn 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...2024-08-1209 min
I'm Aware That I'm Rare: the phaware® podcastDr. Dunbar Ivy - Pulmonary HypertensionIn this episode, Dr. Dunbar Ivy, a pediatric cardiologist, discusses the value of repeat heart catheterization in patients with pulmonary hypertension. He highlights a recent study that compared the findings of the first and second heart catheterizations. The study showed that while the first heart catheterization is important for diagnosis and choosing the best therapies, it is not the best predictor of long-term outcomes. Dr. Ivy emphasizes that the decision to perform a second heart catheterization should be individualized and discussed with the patient's pulmonary hypertension physician. He also mentions that cardiac MRI is becoming more valuable in assessing r...2024-08-0500 min
I'm Aware That I'm Rare: the phaware® podcastClaire Parker, MS, PNP, AC - Pulmonary HypertensionIn 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. ...2024-07-2911 min
I'm Aware That I'm Rare: the phaware® podcastTina Proulx - Pulmonary HypertensionTina 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.glo...2024-07-2216 min
I'm Aware That I'm Rare: the phaware® podcastMarilyn Hanft - Pulmonary HypertensionMarilyn Hanft, a CTEPH patient, shares her experience with the condition. In 2011, she initially mistook her symptoms for asthma but later discovered she had clots in her lungs. Despite her health challenges, she remains determined to live life to the fullest. Hanft discusses her love for sailing and her current plan for writing a book about her sailing experiences. 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.com2024-07-1509 min
I'm Aware That I'm Rare: the phaware® podcastScott Fleetwood - Pulmonary HypertensionScott Fleetwood, a former pulmonary hypertension patient from Buffalo, New York, shares his journey with rare diseases. He initially experienced shortness of breath while playing hockey and was later diagnosed with pulmonary hypertension and scleroderma. Scott received a double lung transplant in 2017. He discusses the initial fear he felt upon learning about his condition and the importance of finding a doctor you trust and following their instructions. He acknowledges the challenges and risks associated with lung transplants but highlights the positive outcomes he has experienced, such as walking his daughter down the aisle and becoming a grandfather. L...2024-07-0812 min
I'm Aware That I'm Rare: the phaware® podcastRobert Frantz, MD - Pulmonary Hypertension In this episode, Dr. Robert Frantz, a cardiologist at the Mayo Clinic, discusses current and upcoming clinical research in pulmonary arterial hypertension (PAH). He emphasizes the low participation rate of PAH patients in clinical trials and encourages patients to consider participating, as it not only benefits themselves but also helps advance medical knowledge. @MayoClinic @MayoMedEd 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 2024-07-0107 min
I'm Aware That I'm Rare: the phaware® podcastAmy Gietzen - Pulmonary HypertensionAmy Gietzen, a patient diagnosed with systemic scleroderma, shares her journey and experiences living with the disease. She discusses her initial symptoms, the shock of the diagnosis, and the lack of information and resources available at the time. Despite facing numerous challenges, including pulmonary fibrosis and pulmonary arterial hypertension, Amy maintains a positive outlook and a determination to be an exception to the prognosis. She emphasizes the importance of education, self-advocacy, and being proactive in managing one's health. Learn even more about Nola and PAH at www.OutnumberPAH.com. #WorldSclerodermaDay #SclerodermaAwarenessMonth #SayScleroderma @srfcure @scleroderma Learn mor...2024-06-2411 min
I'm Aware That I'm Rare: the phaware® podcastAlvin Rocha MSN RN CPN PHN - Pulmonary HypertensionAlvin Rocha is a nurse care manager and pulmonary hypertension coordinator at Children's Hospital Los Angeles. He manages PH patients from birth to early adulthood. His main goal is to prepare these patients for the transition into the adult world. He is excited about the advancements in therapies and clinical trials and looks forward to attending the World PH Symposium to learn more ways to help the patients and families he cares for. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaw...2024-06-1710 min
I'm Aware That I'm Rare: the phaware® podcastDunbar Ivy, MD - Pulmonary HypertensionIn this episode, Dr. Dunbar Ivy, a pediatric cardiologist at the University of Colorado, discusses the upcoming World Symposium on Pulmonary Hypertension, where experts from around the world will gather to discuss the progress made and future directions. Dr. Ivy highlights the work of the pediatric pulmonary hypertension task force, which aims to develop expert opinions on various topics, including the role of different therapies for patients who have failed all available medical treatments. The task force also focuses on understanding genetic abnormalities and developmental lung disorders, defining pulmonary hypertension in neonates, and addressing the challenges of clinical trials...2024-06-1006 min
I'm Aware That I'm Rare: the phaware® podcastNola Martin - Pulmonary HypertensionNola Martin shares her experience with pulmonary arterial hypertension (PAH). Nola describes the physical and mental challenges she faced, including fatigue, weight gain, and the need to ask for help. Nola emphasizes the importance of self-advocacy and fighting for one's own health. She recounts a situation where she had to push her doctor to listen to her concerns and change her medication. Despite the limitations, she has a better quality of life and encourages others to be their own advocates. Learn even more about Nola and PAH at www.OutnumberPAH.com. #SclerodermaAwarenessMonth #SayScleroderma @scleroderma @srfcure ...2024-06-0314 min
I'm Aware That I'm Rare: the phaware® podcastEric Austin, MD - Pulmonary HypertensionIn this episode, Dr. Eric Austin, a pediatric pulmonologist and pulmonary hypertension doctor, discusses the upcoming World Symposium on Pulmonary Hypertension, which will focus on various aspects of pulmonary hypertension research and clinical care. Dr. Austin is part of the task force on genetics and genomics, which aims to explore the genetic landscape of pulmonary hypertension and identify opportunities for future research and therapy development. He highlights the significance of the discovery of the BMPR2 gene and its role in pulmonary arterial hypertension (PAH), leading to the development of the gene-informed therapy sotatercept. Learn more about pulmonary h...2024-05-2712 min
I'm Aware That I'm Rare: the phaware® podcastVictoria McKinnon - Pulmonary HypertensionVictoria McKinnon shares her personal experience with pulmonary hypertension, specifically her son Owen’s eight week battle with the condition. Owen was diagnosed with alveolar capillary dysplasia (ACD), a genetic disease that causes pulmonary hypertension. Despite initial improvements, they ran out of treatment options and ultimately had to make the difficult decision to remove care. Victoria emphasizes the importance of communication and honesty from healthcare professionals, as well as the support and knowledge gained from joining online support groups. She also discussing her fundraising efforts to support research and find solutions for children with PH. Learn more about Victoria’s fu...2024-05-2016 min
I'm Aware That I'm Rare: the phaware® podcastWolf Haley - Pulmonary HypertensionHaley (aka @Wolf Haley), who was diagnosed with pulmonary hypertension (PH) at 18 years old, shares her journey with the disease and how she has found healing and purpose through art and advocacy. Haley discovered her passion for art as a form of therapy, using watercolor to express her thoughts and emotions about living with PH. Haley also works as a TikTok manager for a nonprofit organization and has become involved in advocacy work, using her personal experiences to advocate for healthcare bills and share her story with legislators. She graduates from the community health worker program at UNM this...2024-05-1311 min
I'm Aware That I'm Rare: the phaware® podcastDr. Jason Weatherald - Pulmonary HypertensionDr. Jason Weatherald, a pulmonologist at the University of Alberta, discusses a study on the socioeconomic burden of pulmonary arterial hypertension (PAH) in Canada. The study, conducted through PHA Canada, surveyed PAH patients and their caregivers to understand how the disease affects their ability to work and perform daily activities. The results showed that a significant number of PAH patients were unable to work or had limited career options due to the disease. The study also highlighted the impact of PAH on caregivers, with many having to assist patients with daily activities. The findings emphasize the need for healthcare...2024-05-0608 min
I'm Aware That I'm Rare: the phaware® podcastKaren Martinez - Rare DiseaseKaren Martinez, a mother from Eastvale, California, shares her experience with Camp del Corazon, a camp for children with congenital heart defects and lung disease. Her daughter attended camp for the first time at the age of seven and has been going every summer since. The camp offers events throughout the year and fosters lifelong connections among the campers. #campdelcorazon #heartcamp #camplove #supportagoodcause 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.com2024-04-2908 min
I'm Aware That I'm Rare: the phaware® podcastJoellen Brown - Pulmonary Hypertension In this episode, Joellen Brown shares her experience with pulmonary hypertension (PH) on the 15th anniversary of her diagnosis. Joellen was born with a hole in her heart and had her first open heart surgery at the age of two and a half. She believes she may have had PH since birth, but was not aware of it due to limited research in the 1950s. Joellen emphasizes the importance of having a supportive medical team and family, as well as being proactive in advocating for one's own health. She encourages newly diagnosed individuals to seek out support groups and...2024-04-2209 min
I'm Aware That I'm Rare: the phaware® podcastChelsea Price - Pulmonary Hypertension In this episode, Chelsea Price shares her experience living with pulmonary arterial hypertension (PAH). She emphasizes the importance of having a good support system, including her church community and connecting with other friends with PAH. Chelsea is grateful for the good days she has and strives to be an active mom for her children. Discover even more about Chelsea and PAH at www.OutnumberPAH.com. 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@pha...2024-04-1511 min
I'm Aware That I'm Rare: the phaware® podcastRajan Saggar, MD - Pulmonary Hypertension In this episode, Dr. Rajan Saggar, a pulmonologist at the University of California in Los Angeles, discusses the complications of pulmonary hypertension in various lung diseases. He explains that pulmonary hypertension can either be its own disease or can complicate other conditions such as heart disease or lung tissue diseases like emphysema or fibrosis. Dr. Saggar mentions a recent FDA-approved medication for pulmonary hypertension complicating lung tissue diseases, and ongoing research to develop more treatments. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.gl...2024-04-0810 min
I'm Aware That I'm Rare: the phaware® podcastSandeep Sahay, MD - Pulmonary HypertensionIn this episode, Dr. Sandeep Sahay, a pulmonologist at Houston Methodist Hospital, discusses the concept of disease modification in the treatment of pulmonary hypertension (PH). He explains how traditional PH therapies focus on vasodilation, reducing pressure in the pulmonary artery by dilating blood vessels. However, newer therapies, such as sotatercept, work in different ways to reduce smooth muscle proliferation and thickness of the artery walls. Dr. Sahay suggests that if a drug is labeled as disease-modifying, it may be used in combination with existing PH medications from the beginning of treatment. However, he notes that further research, regulatory approval...2024-04-0108 min
I'm Aware That I'm Rare: the phaware® podcastLewis Romer, MD - Pulmonary HypertensionDr. Lewis Romer discusses his work on the PPHNet's Kids MoD PAH Trial: Mono- vs. Duo-Therapy for Pediatric PAH patients. The Kids Mod PAH study is a research project funded by the NIH that aims to determine the best initial therapy for children with newly diagnosed pulmonary hypertension. The study compares the effectiveness of one medication (sildenafil) versus a combination of two medications (sildenafil and bosentan) in improving the quality of life and functional class of these children. The study team aims to provide enhanced care and support to the participants and their families throughout t...2024-03-1810 min
I'm Aware That I'm Rare: the phaware® podcastMorris Salem, MD - Camp del CorazonIn this episode, Dr. Morris Salem, a pediatric cardiologist, discusses his involvement with Camp del Corazon, a camp for children with congenital heart disease. Dr. Salem emphasizes the importance of addressing the emotional well-being of these patients, in addition to their physical health. He believes that the camp helps boost their self-confidence and allows them to have normal experiences. Dr. Salem also mentions the positive impact the camp has on parents, some of whom become involved in planning and fundraising for the organization. Dr. Salem is also a 2024 Gala del Sol Honoree. This gala is a major fu...2024-03-1107 min
I'm Aware That I'm Rare: the phaware® podcastBrittany Valim - Pulmonary Hypertension In this episode, Brittany Valim shares her experience with pulmonary hypertension and her journey towards a heart and double lung transplant. She now lives a fulfilling life as a mother, student, and aspiring nurse. Brittany encourages others to embrace life and ride the wave, appreciating the rarity of their experiences. 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 2024-03-0413 min
I'm Aware That I'm Rare: the phaware® podcastCam Wells - Rare Disease Day In this episode, stroke survivor and journalist, Cam Wells, discusses his mission to change the way disability stories are portrayed in the media. Cam also discusses his work in the disability community, including his involvement with the Italian Canadian HandiCapable Association, which provides sports and recreation opportunities for people with disabilities. Cam believes that disabilities and rare conditions affect everyone in some way and advocates for inclusivity and respect. #RareDiseaseDay @RareDiseases @DRPI_global @EasterSeals @CJAMFM Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware En...2024-02-2613 min
I'm Aware That I'm Rare: the phaware® podcastHarm Bogaard, MD - Pulmonary HypertensionHarm Bogaard, MD, Ph.D., FAHA is a pulmonologist at the Amsterdam UMC. In this episode, he discusses the use of magnetic resonance imaging (MRI) in monitoring pulmonary hypertension patients. Dr. Bogaard explains that MRI is a valuable tool for assessing the function and structure of the right heart, which is crucial in determining the prognosis and long-term outcomes of patients with 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 2024-02-1906 min
I'm Aware That I'm Rare: the phaware® podcastDawn Clarke - Pulmonary Hypertension Pulmonary hypertension patient, Dawn Clarke, a resident of the Mississaugas of the Credit First Nation in Southern Ontario. Despite her rare disease diagnosis, Dawn decided to focus on her mental health and explore her creative passions. She emphasizes the importance of looking after all aspects of one's well-being, including physical, mental, emotional, and spiritual health. She encourages others to find their purpose and make positive changes in their lives, even in the face of challenges. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.glo...2024-02-1214 min
I'm Aware That I'm Rare: the phaware® podcastLinda Wimmer - Pulmonary Hypertension New Jersey patient, Linda Wimmer, shares her experience with idiopathic pulmonary arterial hypertension. Linda discusses the various medications and lifestyle changes she has had to make to manage her condition. She also mentions dealing with depression and anxiety, as well as the challenges of accepting help from others. 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.com2024-02-0511 min
I'm Aware That I'm Rare: the phaware® podcastPHenomenal Hope 2023 - Pulmonary HypertensionIn this episode, Drs. Patricia George and Harrison "Hap" Farber from Team PHenomenal Hope discuss takeaways and learning from PHenomenal Hope 2023. This symposium offered a combination of oral presentations, expert panel discussions, and poster sessions in an environment that encourages collaboration and a deeper exploration of patient-centered research. They also discuss Team PH's 2024 Research Award program, looking for topics that will help expand access to care and improve clinical status by looking specifically for projects in the topic areas outlined at the PHenomenal Hope 2023 research meeting. Learn more about pulmonary hypertension trials at www.phaware.gl...2024-01-2912 min
I'm Aware That I'm Rare: the phaware® podcastLia Barros, NP - Pulmonary Hypertension Lia Barros, a nurse practitioner at the University of Washington, discusses the role of nurse practitioners in caring for patients with pulmonary hypertension. She emphasizes the importance of nurse practitioners in meeting the unique needs of patients with pulmonary hypertension and suggests that adopting collaborative care models can improve patient outcomes. 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 @uwepidemiology 2024-01-2214 min
I'm Aware That I'm Rare: the phaware® podcastSam Rayner, MD - Pulmonary Hypertension Dr. Sam Rayner is an assistant professor and pulmonary hypertension specialist at the University of Washington. In this episode, he discusses the different ways physicians can get involved in pulmonary hypertension research. He explains that he is a physician scientist, dividing his time between patient care and scientific research focused on PH. 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 @uwepidemiology 2024-01-1509 min
I'm Aware That I'm Rare: the phaware® podcastHarm Bogaard, MD - Pulmonary HypertensionHarm Bogaard, MD, Ph.D., FAHA is a pulmonologist at the Amsterdam UMC. In this episode, he discusses the role of genetic testing in the treatment of patients with pulmonary hypertension at its role in clinical research. 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 2024-01-0811 min
I'm Aware That I'm Rare: the phaware® podcastSharon Tokonitz - Pulmonary Hypertension Six years ago, Canadian pulmonary hypertension patient Sharon Tokonitz was rushed to the hospital with a massive bilateral unprovoked pulmonary embolism. She discusses her road to recovery from being bedridden to returning to an active life thanks to pulmonary rehab. 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 2023-12-2805 min
I'm Aware That I'm Rare: the phaware® podcastPulmonary Hypertension - Saire Gonzalez, RN and Kimberly Hudson, RN Kimberly Hudson and Saire Gonzalez are registered nurses with CVS Specialty Pharmacy who work with patients with pulmonary hypertension (PH). They provide support, education, and guidance to patients who are newly diagnosed with PH and help them navigate their drug therapies and lifestyle changes. They also highlight the role of caregivers and the availability of support groups for both patients and caregivers. @CVSHealth 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 2023-12-2110 min
I'm Aware That I'm Rare: the phaware® podcastPulmonary Hypertension - Raymond L. Benza, MD In this episode, Dr. Raymond Benza, a Professor of Medicine at the Icahn School of Medicine at Mount Sinai, discusses dual therapy in the treatment of pulmonary hypertension (PH) through the concept of risk stratification. 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 @IcahnMountSinai @RaymondBenzaMD2023-12-1805 min
I'm Aware That I'm Rare: the phaware® podcastPulmonary Hypertension - Nancy Halnon, MD In this episode, pediatric cardiologist, Nancy Halnon, MD, discusses treatment goals for pulmonary hypertension, the various routes of administration and the importance of using combination therapy to improve survival. 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 @UCLAMCH2023-12-1118 min
I'm Aware That I'm Rare: the phaware® podcastPulmonary Hypertension - Angela Bates, MD In this episode, Angela Bates, MD from Stollery Children’s Hospital, discusses the importance of incorporating quality of life into the management strategies for pediatric pulmonary hypertension patients. Dr. Bates also talks about the importance of allowing patients to engage in activities they enjoy, even with limitations imposed by their condition, and the need for a multidisciplinary team to provide comprehensive 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 @pphnet...2023-12-0412 min
I'm Aware That I'm Rare: the phaware® podcastPulmonary Hypertension - Vinicio de Jesus Perez, MDIn 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: info@phaware.com #phawareMD @PHatStanford @Viniciodjperez 2023-11-2717 min
I'm Aware That I'm Rare: the phaware® podcastPulmonary Hypertension - Peter Leary, MDIn this episode, Peter Leary, MD talks about factors that might lead to over-treatment, under-treatment, or "just-right" treatment and emphasizes that guidelines are important but there is no "one-size fits all" approach to treatment of pulmonary hypertension. Peter Leary is the director of the pulmonary vascular disease program at the University of Washington. He also has a PhD in epidemiology and is very interested in clinical and translational research for patients with pulmonary hypertension locally, nationally, and internationally. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for...2023-11-2011 min
I'm Aware That I'm Rare: the phaware® podcastSanjay Mehta, MD - Pulmonary Hypertension In this episode, PHA Canada Board Director, Sanjay Mehta, MD discusses the recently updated 2022 ESC/ERS Guidelines for the diagnosis and treatment of pulmonary hypertension, the gaps in understanding and the reasons why. 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 #phawareMD2023-11-1327 min
I'm Aware That I'm Rare: the phaware® podcastKarina Macias - Pulmonary HypertensionIn this episode, pulmonary hypertension pediatric care partner, Karina Macias, discusses her son Tito's PH journey and why she dedicated her life to becoming a certified nurse assistant. Tito was named Stanford's Race Against PH 2023 Pediatric PH Courage Award recipient. #raceagainstph @phaatstanford 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 2023-11-0810 min
I'm Aware That I'm Rare: the phaware® podcastMitesh Thakrar, MD - Pulmonary HypertensionMitesh Thakrar, MD is a Clinical Associate Professor at the University of Calgary and the current Deputy Medical Director of the Southern Alberta Transplant Program. In this episode, Dr. Thakrar discusses titration of pulmonary arterial hypertension therapeutics. 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 #phawareMD2023-11-0613 min
I'm Aware That I'm Rare: the phaware® podcastSarah Sizemore - Pulmonary Hypertension Former pulmonary hypertension patient, Sarah Sizemore discusses life 1 year post-lung transplant surgery. 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 2023-10-3008 min
I'm Aware That I'm Rare: the phaware® podcastKristina Kudelko, MD - Pulmonary HypertensionKristina Kudelko, MD, is the Director of Education and Stanford's Vera Moulton Wall Center. She discusses the 23rd annual #RaceAgainstPH, how it raises awareness and funds for this devastating rare disease and the importance of PH Courage Award winners. Don't miss the 23rd Annual Race Against PH at November 5 hosted by the Vera Moulton Wall Center for Pulmonary Vascular Disease at Stanford. Click here to learn more. #raceagainstph @phaatstanford 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 Shar...2023-10-2706 min
I'm Aware That I'm Rare: the phaware® podcastSteve Smith - Pulmonary Hypertension In this episode, pulmonary hypertension patient, Steve Smith discusses the importance of a good support team and how he tackled anxiety and his passion for musical theater. 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 2023-10-2315 min
I'm Aware That I'm Rare: the phaware® podcastKendra Meneghetti - Pulmonary HypertensionIn this episode, pulmonary hypertension patient and Stanford's Race Against PH 2023 Adult PH Courage Award recipient, Kendra Meneghetti, discusses her lifelong battle with PH, the challenge of receiving a transplant during Covid, and how her band provides a unique outlet by releasing her trauma through music. Don't miss the 23rd Annual Race Against PH at November 5 hosted by the Vera Moulton Wall Center for Pulmonary Vascular Disease at Stanford. Click here to learn more. #raceagainstph @phaatstanford Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cu...2023-10-1610 min
I'm Aware That I'm Rare: the phaware® podcastHarrison "Hap" Farber, MD - Pulmonary HypertensionIn this episode, Harrison "Hap" Farber, MD discusses PHenomenal Hope 2023. Join renowned experts as well as rising young investigators and allied healthcare providers as they share original research. This symposium offers a combination of oral presentations, expert panel discussions, and poster sessions in an environment that encourages collaboration and a deeper exploration of patient-centered research. This even takes place December 15, 2023 Omni Boston Hotel at the Seaport For more info and to register, visit: www.PAH2023.com Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us o...2023-10-0904 min
I'm Aware That I'm Rare: the phaware® podcastJoan Gibson - Pulmonary Hypertension Canadian pulmonary hypertension care partner, Joan Gibson discusses her daughter Jane's path to diagnosis, decision to embrace surrogacy, and her road to recovery after two PH related strokes. 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 2023-10-0214 min
I'm Aware That I'm Rare: the phaware® podcastJo-Anne Mainwood - Pulmonary HypertensionPulmonary hypertension patient, Jo-Anne Mainwood, is a Canadian school teacher who couldn’t keep up with her students, friends and family. After a long journey of misdiagnosis, Jo-Anne details why PH is not a one-size-fits-all 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 @phacanada 2023-09-2507 min
I'm Aware That I'm Rare: the phaware® podcastJennifer Gendron - Pulmonary Hypertension On the 14th anniversary of her son's life-saving lung transplant, Canadian pulmonary hypertension care partner, Jennifer Gendron discusses how the PH landscape has changed over the past 20 years and life post-surgery. 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 2023-09-1812 min
I'm Aware That I'm Rare: the phaware® podcastDon Downey - Pulmonary Hypertension Canadian pulmonary hypertension care partner, Don Downey, discusses his wife Kathy's road to diagnosis -- which was confirmed on Friday March 13, 2020 -- the day the world shut down and how they navigated her new normal during lockdown. 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 2023-09-1109 min
I'm Aware That I'm Rare: the phaware® podcastCarol Doyle Ploughman - Pulmonary Hypertension15 years ago, after the birth of her 2nd child, Canadian pulmonary hypertension patient, Carol Doyle Ploughman was told she had only two years to live. Now, a decade and a half later, on her birthday, Carol discusses how she has maintains a healthy and active lifestyle and the importance of clinical trials for PH 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 @phacanada 2023-09-0414 min
I'm Aware That I'm Rare: the phaware® podcastColleen Carroll - Pulmonary Hypertension Canadian pulmonary hypertension patient, Colleen Carroll was wrongly diagnosed with severe anxiety and asthma before she ever heard the words "pulmonary hypertension." Now she faces each day with a positive attitude, a good diet, exercise regimen, and the power of her faith. 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 2023-08-2806 min
I'm Aware That I'm Rare: the phaware® podcastJane Macleod - Pulmonary Hypertension Canadian pulmonary hypertension and scleroderma patient, Jane Macleod is a retired RN. She discusses reasons for her delayed diagnosis, the importance of pulmonary rehab, and the challenges of living a her new normal. 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 2023-08-2106 min
I'm Aware That I'm Rare: the phaware® podcastVanda McLean - Pulmonary Hypertension Canadian pulmonary hypertension patient, Vanda McLean was forced into early retirement due to her diagnosis. She discusses how she navigates depression, the importance of support and how she faces an uncertain future. 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 2023-08-1410 min
I'm Aware That I'm Rare: the phaware® podcastJas James - Pulmonary Hypertension Long-term Canadian pulmonary hypertension and lupus survivor, Jas James discusses survivor's guilt and the importance of both emotional and physical support from friends, family and fellow 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 @phacanada 2023-08-0706 min
I'm Aware That I'm Rare: the phaware® podcastSusan Cosenzo - Pulmonary Hypertension Canadian pulmonary hypertension patient, Susan Cosenzo discusses her PH diagnosis, the struggles of being a single mom living in government housing and how she overcame alcohol addiction. 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 2023-07-3110 min
I'm Aware That I'm Rare: the phaware® podcastKaitlyn Salonga - Pulmonary Hypertension Canadian pulmonary hypertension patient, Kaitlyn Salonga discusses the impact PH has had on her job, her relationship and her mental wellbeing. 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 2023-07-2408 min
I'm Aware That I'm Rare: the phaware® podcastJane Sernoskie - Pulmonary Hypertension PHA Canada Patient Ambassador, Jane Sernoskie discusses her pulmonary hypertension diagnosis and becoming a mom through surrogacy. 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 2023-07-1705 min
I'm Aware That I'm Rare: the phaware® podcastKristine Ritchie - Pulmonary Hypertension Canadian Pediatric PH Care Partner, Kristine Ritchie, discusses her son Brendan's 10 plus year journey with pulmonary hypertension, the importance of self-care and the impact PH has on her entire family. 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 2023-07-1011 min
I'm Aware That I'm Rare: the phaware® podcastEric Austin, MD - Pulmonary Hypertension Eric Austin is the Director of the Vanderbilt Pediatric Pulmonary Hypertension Program at Vanderbilt University Medical Center’s Monroe Carell Jr. Children's Hospital. He is also a member of the adult program’s Vanderbilt Pulmonary Hypertension Clinical and Research Program, with whom he leads and/or participates in various translational research studies. In this episode, Dr. Austin discusses pulmonary hypertension associated with developmental lung disorder. 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...2023-06-2616 min
I'm Aware That I'm Rare: the phaware® podcastLew Romer, MD - Pulmonary HypertensionLew Romer, MD is a Professor of Anesthesiology and Critical Care Medicine, Johns Hopkins Medicine in Baltimore, Maryland. Dr. Romer discusses the importance of clinical trials in the pediatric pulmonary hypertension population and his work on the PPHNet's Kids MoD PAH Trial: Mono- vs. Duo-Therapy for Pediatric PAH 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 #phawareMD #PPHNet @PPHNet @HopkinsMedicine Learn more about the Kids MoD PAH Trial: http...2023-06-1915 min
I'm Aware That I'm Rare: the phaware® podcastDr. Bernard Thébaud - Pulmonary Hypertension Dr. Bernard Thébaud is a clinician-scientist with a focus on the clinical translation of stem cell-based therapies for lung diseases. Dr. Thébaud is a senior scientist with the Ottawa Hospital Research Institute (OHRI) and Children’s Hospital of Eastern Ontario Research Institute (CHEO RI), and a neonatologist with the Children’s Hospital of Eastern Ontario (CHEO), where he provides care to critically ill newborns. In this episode Dr. Thébaud discusses the importance of innovative cell-based or gene therapies to lessen pulmonary hypertension. Learn more about pulmonary hypertension trials at www.phaware.global/clinicalt...2023-04-0305 min
I'm Aware That I'm Rare: the phaware® podcastKarri Reynolds - Pulmonary HypertensionCTEPH patient, Karri Reynolds spent years bouncing from specialist to specialist due to her failing health. In this episode, she details how self-advocating led and a desperate facebook post led to her being diagnosed at age 40 (by a pediatric cardiologist)! 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 Share your story: info@phaware.com2022-09-2616 min
I'm Aware That I'm Rare: the phaware® podcastChandani DeZure, MD Part 1 - Pulmonary HypertensionIn this episode, board certified pediatrician and mother to a young child with idiopathic PAH, Chandani DeZure, MD, shares advice & tips for parents navigating this rare diagnosis and offers a unique perspective from both the patient/caregiver and physician side. 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 Share your story: info@phaware.com2022-09-1907 min
I'm Aware That I'm Rare: the phaware® podcastChandani DeZure, MD Part 1 - Pulmonary HypertensionIn this episode, Chandani DeZure, MD, a board certified pediatrician and mother to a young child with idiopathic PAH, shares the heart-wrenching journey of her son's rare disease diagnosis during the height of the COVID crisis. She details physical and emotional toll it has taking on her son and 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 #ClinicalTrials Share your story: info@phaware.com2022-09-1209 min
I'm Aware That I'm Rare: the phaware® podcastShannon O'Donnell - Pulmonary HypertensionPulmonary Hypertension patient Shannon O'Donnell was diagnosed with PH at age six. Shannon discusses the importance of PH kids getting to attend summer camps geared to children impacted with rare disease, including Paul and Joanne Newman's The Hole In the Wall Gang Camp and Serious Fun Network. 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 Share your story: info@phaware.com2022-09-0506 min
I'm Aware That I'm Rare: the phaware® podcastLarissa Domenichelli - Pulmonary HypertensionIn this episode, pulmonary hypertension patient, Larissa Domenichelli discusses her rare disease diagnosis and why she feels like a 73 year old trapped in a 37 year old's body. 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 Share your story: info@phaware.com2022-08-2907 min
I'm Aware That I'm Rare: the phaware® podcastTina Gardner - Pulmonary HypertensionPulmonary hypertension patient, Tina Gardner had never heard of PH when her mom was diagnosed in 1994. 28 years later, she's all too familiar with the disease after she, her nephew, her niece as well as her great nephew have been diagnosed with this rare disease. In this episode, Tina talks about the importance of support groups, especially ones like the one she created for families impacted by heritable pulmonary arterial hypertension. 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, YouTub...2022-08-2209 min
I'm Aware That I'm Rare: the phaware® podcastNicole Hogan - Pulmonary HypertensionPulmonary hypertension patient, Nicole Hogan was diagnosed in 2018. Four years later she is still grappling with her rare disease prognosis. PH has changed her life. Now she advocates for herself and the community to help make PH history. 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 Share your story: info@phaware.com2022-08-1506 min
I'm Aware That I'm Rare: the phaware® podcastCarol Templeton - Pulmonary Hypertension (CTEPH)In this episode, CTEPH patient, Carol Templeton details her complex surgery, called pulmonary thromboendarterectomy (PTE), which involves the removal of chronic clots from the lung vessel and the impact it had on her as the adoptive mom to her 18 month old daughter. 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 Share your story: info@phaware.com2022-08-0810 min
I'm Aware That I'm Rare: the phaware® podcastKaitlyn Thompson - Pulmonary HypertensionIn this episode, pulmonary hypertension patient, Kaitlyn Thompson describes coming to terms with the difficult reality of not being able to carry a pregnancy due to her PH, as well as detailing an emotional recent near death experience. 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 Share your story: info@phaware.com2022-08-0111 min
I'm Aware That I'm Rare: the phaware® podcastErica Hutchison - Pulmonary HypertensionIn this episode, pulmonary hypertension patient, Erica Hutchison discusses her long road to diagnosis which included multiple doctors and cardiologists telling her that her PH symptoms and panic attacks my just be "all in her head." Now, 10+ years post-diagnosis, Erica has a passion for art and music and is working on her Doctorate of Music in composition and theory. 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 #Cli...2022-07-2509 min
I'm Aware That I'm Rare: the phaware® podcastAre you #phaware?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: phawarepodcast.libsyn.com/site/contact2021-01-1501 min
I'm Aware That I'm Rare: the phaware® podcastErica Huntzinger - Pulmonary HypertensionErica 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 #ClinicalTrials2020-11-0213 min
I'm Aware That I'm Rare: the phaware® podcastAlex Minnick - Pulmonary HypertensionAlex Minnick discusses his role as a pulmonary hypertension caregiver to his father, PH patient, Dan Minnick, over the past decade in this Father's Day Edition of the phaware podcast. 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 #ClinicalTrials2020-06-2210 min
I'm Aware That I'm Rare: the phaware® podcastKevin Paskawych - pulmonary hypertension encoreENCORE EDITION: Kevin Paskawych is a pulmonary hypertension patient and car racing enthusiast from Ohio. Kevin discusses his dream to drive PH Awareness through his PHenomenal Motorsports iRacing Team and by taking awareness from the digital realm into the real world. Here's Some Good News... Tune into FS1 Tonight (May 26) at 7:30pm ET for the Alsco 300 and see it become a reality for Kevin! NASCAR is the 1st LIVE sporting event to return since #COVID19 crisis. THANK YOU to driver Brett Moffitt Racing for being #phaware. @phaware is stickered on Brett's "02" car! (Thanks to Kevin P...2020-05-2507 min
I'm Aware That I'm Rare: the phaware® podcastMarie and Zack Rand - Breathless on BroadwayCo-founder and Managing Director of phaware global association®, Marie Rand and her son Zach discuss breathless on Broadway® an event that honors the memory of Chloë Rand and all people touched by pulmonary hypertension. Get tickets at www.breathlessonbroadway.com #30UnitedVoices 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 @antidote_me 2019-09-3015 min
I'm Aware That I'm Rare: the phaware® podcastMarion Roth - Pulmonary HypertensionCanadian 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 @phacanada2018-10-1506 min
I'm Aware That I'm Rare: the phaware® podcastTom Krohn - Clinical TrialsTom 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 hospital and retail pharmacies, and the pharmaceutical industry. He has a personal passion and commitment to use his talents to serve the marginalized of society. Learn more about pulmonary hypertension trials a...2018-09-2410 min
I'm Aware That I'm Rare: the phaware® podcastVIPhaware Pin Trading - A #phaware Global ActivationA LIVE Global #phaware Activation. phaware global association® invites you to become a #VIPhaware Pin Trader! Participate in a LIVE “treasure hunt.” phaware® President and Co-Founder, Steve Van Wormer details how Int’l PH Conference & Scientific Sessions attendees can be part of an inclusive, fun and educational experience for exhibit hall visitors of all ages taking place June 28 - July 1 in Orlando, Florida. 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/don2018-06-2505 min
I'm Aware That I'm Rare: the phaware® podcastWorld PH Day 2018 - May 5thA LIVE Global #phaware Activation. Every year on May 5th, pulmonary hypertension organizations and groups around the world participate in World Pulmonary Hypertension Day activities to raise awareness of this rare and often-misdiagnosed disease and to celebrate the lives of the global PH community. This year, phaware global association® invites you to become a #phaware Brand Ambassador! phaware® President and Co-Founder, Steve Van Wormer details 5 WAYS YOU CAN GET INVOLVED with the Stream.Live App on Saturday May 5th for #WorldPHDay Learn more about pulmonary hypertension at www.phaware365.global. Never miss an episode with the phaware...2018-04-3007 min
I'm Aware That I'm Rare: the phaware® podcastJohn Hess - Pulmonary HypertensionJohn Hess is one of phaware global association’s co-founders. He and his wife Seema are caregivers to their son, Iain, who was diagnosed with pulmonary hypertension at age 5. Iain is a recent recipient of a double lung transplant. With a background in engineering and technology, John details phaware’s Walk.Talk.Track.™ pulmonary hypertension mobile research application being developed to determine the quality of life of patients living with PH. Learn more about pulmonary hypertension at phaware365.global. Never miss an episode with the phaware® podcast app. Follow us on facebook, twitter, instagram, youtube & linkedin @phaware #phaware ...2017-11-0208 min