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

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

Health & Wellness Podcasts

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

Location:

United States

Description:

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

Twitter:

@phaware

Language:

English

Contact:

8183953529


Episodes

Episode 460 - Lewis Romer, MD

3/18/2024
Dr. 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 the study. The ultimate goal is to contribute to improving the care and outcomes for all children 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 #PPHNet @PPHNet @HopkinsMedicine Learn more about the Kids MoD PAH Trial: https://clinicaltrials.gov/ct2/show/NCT04039464

Duration:00:10:46

Episode 459 - Morris Salem, MD

3/11/2024
In 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 fundraiser for the camp taking place Saturday, April 13, 2024. Click Here for Tickets. Click Here to take part in the virtual auction. #galadelsol #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.com

Duration:00:07:54

Episode 458 - Brittany Valim

3/4/2024
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

Duration:00:13:21

Episode 457 - Cam Wells

2/26/2024
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 Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com

Duration:00:13:26

Episode 456 - Harm Bogaard, MD

2/19/2024
Harm 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

Duration:00:06:13

Episode 455 - Dawn Clarke

2/12/2024
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.global/donate #phaware Share your story: info@phaware.com @phacanada

Duration:00:14:46

Episode 454 - Linda Wimmer

2/5/2024
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.com

Duration:00:11:21

Episode 453 - PHenomenal Hope 2023

1/29/2024
In 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.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com #phawareMD

Duration:00:12:15

Episode 452 - Lia Barros, NP

1/22/2024
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

Duration:00:14:24

Episode 451 - Sam Rayner, MD

1/15/2024
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

Duration:00:09:14

Episode 450 - Harm Bogaard, MD

1/8/2024
Harm 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

Duration:00:11:10

Episode 449 - Sharon Tokonitz

12/28/2023
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

Duration:00:05:54

Episode 448 - Saire Gonzalez, RN and Kimberly Hudson, RN

12/21/2023
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

Duration:00:10:37

Episode 447 - Raymond L. Benza, MD

12/18/2023
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 @RaymondBenzaMD

Duration:00:05:46

Episode 446 - Nancy Halnon, MD

12/11/2023
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 @UCLAMCH

Duration:00:18:26

Episode 445 - Angela Bates, MD

12/4/2023
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 @PHACanada

Duration:00:12:20

Episode 444 - Vinicio de Jesus Perez, MD

11/27/2023
In 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

Duration:00:17:59

Episode 443 - Peter Leary, MD

11/20/2023
In 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 a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com #phawareMD @uwepidemiology

Duration:00:11:19

Episode 442 - Sanjay Mehta, MD

11/13/2023
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 #phawareMD

Duration:00:27:49

Episode 441 - Karina Macias

11/8/2023
In 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

Duration:00:10:55