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

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 372 - Gerry Langan

6/20/2022
In this episode, Gerry Langan (@itsgerrylangan), pulmonary hypertension and heart failure patient advocate, discusses how sharing her story and leveraging social media is how she took back power in an uncontrollable situation after being diagnosed with a disease that is progressive and uncontrollable. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram,...

Duration:00:13:02

Episode 371 - Shavini Fernando

6/13/2022
In this episode, Shavini Fernando discusses her severe pulmonary hypertension diagnosis due to Eisenmenger's Syndrome. After facing multiple cardiac arrests and strokes due to the low oxygen levels in her body, she developed OxiWear, the first ever wearable for continuous blood oxygen monitoring device that alerts patients who are prone to hypoxia to live life independent without having to worry about their oxygen levels. Use Coupon Code "PHA2022" to receive 20% off if you purchase a OxiWear...

Duration:00:12:37

Episode 370 - Catherine Falardeau

6/8/2022
In this episode, scleroderma patient, Catherine Falardeau, discusses her road to diagnosis and how a right heart catheterization, led to also being diagnosed with PAH, ILD, Raynaud's, and Pulmonary Fibrosis. Catherine recently participated in a 108 week clinical trial for the use of TYVASO® in PAH/ILD patients. The trial lasted into Covid, and received FDA approval. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware®...

Duration:00:09:09

Episode 369 - Amanda Howard

4/4/2022
In this episode, pulmonary hypertension caregiver, Amanda Howard, discusses her 17-year-old daughter Abby's lifelong battle with PH after being diagnosed in the PICU at 8 months old. 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

Duration:00:09:00

Episode 368 - KC Yates

3/28/2022
In this episode, pulmonary hypertension patient, KC Yates, discusses battling COVID-19 twice during the pandemic and how she relies on her inner-strength to battle her rare disease. 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

Duration:00:09:13

Episode 367 - Dawn Meador

3/14/2022
In this episode, long-term pulmonary hypertension patient, Dawn Meador, discusses navigating her PH during a pandemic as well as why she and her husband chose to adopt after her PH diagnosis. 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

Duration:00:11:25

Episode 366 - Mary Hale

3/7/2022
In this episode, pulmonary hypertension patient, Mary Hale discusses the power of positivity in life post PAH diagnosis. 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

Duration:00:09:52

Episode 365 - Tarya Morel

2/28/2022
In this episode, Canadian pulmonary hypertension patient, Tarya Morel discusses parenting in times of a pandemic. 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 @TaryaMorel @phacanada #covid19

Duration:00:10:45

Episode 364 - Sandeep Sahay, MD and Jordin Rice, RN

11/29/2021
In this episode, pulmonologist Sandeep Sahay, MD and Jordin Rice, RN from Houston Methodist Lung Center discuss a nurse's role in informing and educating pulmonary arterial hypertension patients about clinical trials. 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

Duration:00:14:36

Episode 363 - Kayla Dunlop

11/22/2021
Kayla Dunlop is a pulmonary hypertension patient from Southern California. In this episode, Kayla discusses being born with a rare condition called giant omphalocele (GO), the challenge of adjusting to life on oxygen 24/7, and how she is using her creative spirt to make jewelry to raise funds and awareness for pulmonary hypertension. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware...

Duration:00:10:12

Episode 362 - Doug Evans

11/15/2021
Doug Evans is a Pulmonary Hypertension patient from Florida. In this episode, Doug discusses his time in the military as a bomb loader, why he had to move from Colorado to lower altitude due to his PH, and how his treadmill and passion for Team PHenomenal Hope helped him lose over 80 pounds by simply walking. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter,...

Duration:00:12:00

Episode 361 - Derek Henderson

11/8/2021
Derek Henderson is a #CTEPH patient from Toronto, Canada. In this episode Derek discusses is road to diagnosis with a rare form of pulmonary hypertension, the mental challenge of PTE surgery and the misconceptions of Canada's socialized medicine program. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure:...

Duration:00:07:03

Episode 360 - Kelly Lynch

11/1/2021
Kelly Lynch is a pulmonary hypertension patient from San Francisco. In this episode, Kelly discusses her parasitic twin, battling depression and finding a platform to express her rareness on TikTok. 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

Duration:00:09:10

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

1/15/2021
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/contact

Duration:00:01:58

Episode 359 - Raymond Benza, MD

12/28/2020
Dr. Raymond Benza is the Director for the Division of Cardiovascular Medicine at “THE” Ohio State University. He has been in practice for more than 20 years. In this episode, Dr. Benza discusses GossamerBio’s GB002 Phase 2 Study and explains what differentiates GB002 from other investigational drugs in development. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter,...

Duration:00:09:44

Episode 358 - Roz Jones

12/21/2020
Rosalind Marshall-Jones is an innovative speaker with more than 15 years of experience in the caregiving industry. She is a seasoned health care provider, who runs Jacksonville’s Best Caregivers, an organization that provides short and long-term health care. In this episode, Roz discusses the impact #covid19 has had on home healthcare from anxiety, depression to feelings of isolation. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode...

Duration:00:11:39

Episode 357: PAH Today - Moving Forward

12/16/2020
SPECIAL EDITION: Moving Forward The PAH Initiative and United Therapeutics are excited to bring you the PAH Today National Broadcast Series. This series of virtual events is intended for adult patients with pulmonary arterial hypertension (PAH) and their caregivers. Advancements in the care and treatment of PAH are improving the lives of those impacted by this life-threatening disease. The National Broadcast Series will include insights and perspectives on today’s approaches to managing...

Duration:00:17:07

Episode 356 - David Harris

12/14/2020
David F. Harris founded Insight & Measurement and provides research, training and speaking to the industry. In this episode, he discusses the qualitative and quantitative work that he conducts with PAH patients, so that people who get invited to be part of these types of studies have some understanding of what actually the process is like and what gets done with those results. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with...

Duration:00:11:13

Episode 355 - PAH Today: The Pathways To Treatment

12/9/2020
SPECIAL EDITION: The Pathways To Treatment The PAH Initiative and United Therapeutics are excited to bring you the PAH Today National Broadcast Series. This series of virtual events is intended for adult patients with pulmonary arterial hypertension (PAH) and their caregivers. Advancements in the care and treatment of PAH are improving the lives of those impacted by this life-threatening disease. The National Broadcast Series will include insights and perspectives on today’s approaches...

Duration:00:22:48

Episode 354 - Sarah Sizemore

12/7/2020
PAH patient Sarah Sizemore discusses being diagnosed with pulmonary hypertension at a young age in Denver, her family's decision to move from altitude and how positivity helps her face this disease. 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

Duration:00:07:04