Episode 463 - Rajan Saggar, MD
I'm Aware That I'm Rare
by phaware global association
4d ago
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/cli ..read more
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Episode 461 - UNISUS PAH Clinical Trial
I'm Aware That I'm Rare
by phaware global association
2w ago
SPECIAL EDITION: Jonathan Hudson is a Global Trial Leader in Pulmonary Hypertension at Janssen Research & Development and is accompanied by colleague Josephine Garcia-Ferrer, Ph.D and Medical Manager. Jonathan and Josephine discuss Pulmonary Arterial Hypertension (PAH), the importance of clinical trials, what they entail, and share information on Janssen’s UNISUS Study for adults with PAH. Learn more about UNISUS Study with the Janssen Global Trial Finder. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cur ..read more
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Episode 460 - Lewis Romer, MD
I'm Aware That I'm Rare
by phaware global association
3w ago
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 t ..read more
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Episode 459 - Morris Salem, MD
I'm Aware That I'm Rare
by phaware global association
1M ago
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 ..read more
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Episode 458 - Brittany Valim
I'm Aware That I'm Rare
by phaware global association
1M ago
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  ..read more
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Episode 457 - Cam Wells
I'm Aware That I'm Rare
by phaware global association
1M ago
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 ..read more
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Episode 456 - Harm Bogaard, MD
I'm Aware That I'm Rare
by phaware global association
1M ago
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 stor ..read more
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Episode 455 - Dawn Clarke
I'm Aware That I'm Rare
by phaware global association
2M ago
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 ..read more
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Episode 454 - Linda Wimmer
I'm Aware That I'm Rare
by phaware global association
2M ago
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 ..read more
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Episode 453 - PHenomenal Hope 2023
I'm Aware That I'm Rare
by phaware global association
2M ago
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 res ..read more
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