Explorez tous les épisodes du podcast I'm Aware That I'm Rare: the phaware® podcast
| Titre | Date | Durée | |
|---|---|---|---|
| Episode 523 - Rodolfo Estrada, MD | 03 Jun 2025 | 00:08:33 | |
Dr. Rodolfo Estrada, is a seasoned pulmonologists currently at UT Health San Antonio with significant experience in the management of patients with different forms of pulmonary hypertension. In this episode, Dr. Estrada will discuss the technology and clinical development behind YUTREPIA™ (treprostinil) inhalation powder and why it might be a good option for some PAH and PH-ILD patients. YUTREPIA is approved for the treatment of pulmonary arterial hypertension (PAH; WHO Group 1) and pulmonary hypertension associated with interstitial lung disease (PH-ILD; WHO Group 3) to improve the ability to exercise. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com. #phawareMD #PHILD @Liquidia_Corp @REstradaMD @UTHealthSA IMPORTANT SAFETY INFORMATION
Tell your healthcare provider about all of the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. YUTREPIA and other medicines may affect each other. Especially tell your healthcare provider if you take:
What are the possible side effects of YUTREPIA? This product can cause serious side effects, including:
The most common side effects of YUTREPIA are cough, headache, throat irritation and pain, nausea, reddening of the face and neck (flushing), fainting or loss of consciousness, dizziness, diarrhea, and shortness of breath. Like other inhaled prostaglandins, you may have trouble breathing after taking YUTREPIA because it may cause the muscles around your airway to tighten (bronchospasm). These are not all the possible side effects. Call your doctor for medical advice about side effects or if you have trouble breathing. You may report side effects to the FDA at www.fda.gov/MedWatch or call 1–800-FDA-1088. The risk information provided here is not comprehensive. To learn more about YUTREPIA, talk with your healthcare provider. Please see Full Prescribing Information for YUTREPIA and Instructions for Use. For additional information, call 1–888–393–5732. | |||
| Episode 522 - Marc Simon, MD | 26 May 2025 | 00:32:15 | |
Decoding Pulmonary Hypertension: Echo and Cath Insights for Pulmonologists. Dr. Marc Simon shares his expertise on diagnosing pulmonary hypertension, emphasizing echocardiographic markers, right heart catheterization pitfalls, and risk stratification with the H2FPEF score. His insights help clinicians refine their diagnostic approach for better patient outcomes. This Special Edition episode is sponsored by Liquidia. View PDF Slides here. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com. #phawareMD #PHILD @Liquidia_Corp @UCSFCardiology @MarcSimonMD @CalThoracic | |||
| Episode 513 - Kristin Highland, MD | 24 Mar 2025 | 00:17:12 | |
Kristin Highland, MD, from the Cleveland Clinic discusses the importance of shared decision-making and patient preferences when treating patients with pulmonary hypertension. Dr. Highland, emphasizes that the patient is the true expert on their own body and that it is crucial to understand their perspective when making treatment decisions. She highlights the need to consider factors beyond just clinical outcomes, such as side effects, costs, and the patient's ability to manage the therapy. She underscores the evolving role of patient-reported outcomes in medical decision-making and the need for open communication between providers and patients to ensure individualized and preference-aligned care. This Special Edition episode Sponsored by: Johnson & Johnson 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 | |||
| Episode 422 - Kristine Ritchie | 10 Jul 2023 | 00:11:16 | |
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 | |||
| Episode 421 - Eric Austin, MD | 26 Jun 2023 | 00:16:10 | |
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 | |||
| Episode 420 - Lew Romer, MD | 19 Jun 2023 | 00:15:52 | |
Lew 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 Learn more about the Kids MoD PAH Trial: https://clinicaltrials.gov/ct2/show/NCT04039464
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| Episode 419 - Brin Marks | 12 Jun 2023 | 00:10:02 | |
PHA Canada Ambassador and pulmonary arterial hypertension patient, Brin Marks, discusses her road to diagnosis, her strategies for staying positive and why she wants to be a voice for change for pediatric PH patients everywhere. 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 | |||
| Episode 418 - Sanjay Mehta, MD | 05 Jun 2023 | 00:15:49 | |
PHA Canada Board Director, Sanjay Mehta, MD, on 15 years of inspiring achievements in advocacy, research, and community support for the 2023 National PH Community Conference taking place June 9-10 in Ottawa, ON and what lies ahead for the future. PHA Canada invites you to celebrate 15 years of inspiration at this year’s National Community Conference June 9-10! Can’t join in person? Register as a virtual participant! 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 | |||
| Episode 417 - Nicole Dempsey | 29 May 2023 | 00:06:42 | |
Pulmonary Hypertension patient and PHA Canada Board Chair, Nicole Dempsey, celebrates 15 years of inspiring achievements in advocacy, research, and community support for the 2023 National PH Community Conference taking place June 9-10 in Ottawa, ON. PHA Canada invites you to celebrate 15 years of inspiration at this year’s National Community Conference June 9-10! Can’t join in person? Register as a virtual participant! 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 | |||
| Episode 416 - Katharine Clapham, MD | 22 May 2023 | 00:08:51 | |
Katharine Clapham, MD is an Assistant Professor in the Division of Cardiovascular Medicine at University of Utah Health. @UofUHealth In this episode, Dr. Clapham discusses methamphetamine-associated pulmonary arterial 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 | |||
| Episode 415 - Uli Campbell | 15 May 2023 | 00:07:08 | |
In this episode, newly diagnosed pulmonary arterial hypertension patient, Uli Cambell, discuss her rollercoaster of emotions and how educating herself about PH has given her hope in navigating and advocating for her 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 | |||
| Episode 414 - Elise Whalen, MSN, APRN | 08 May 2023 | 00:07:52 | |
Elise Whalen is a Family Nurse Practitioner from Texas Children's Hospital’s Pulmonary Hypertension program. In this episode, she discusses the importance of mental health screening and how the PPHNet is undertaking a multi-center study addressing the impact anxiety and depression has on their pediatric 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 | |||
| Episode 413 - Nidhy P. Varghese, MD | 01 May 2023 | 00:18:45 | |
Nidhy P. Varghese, MD is a pediatric pulmonologist and the Medical Director of the pediatric pulmonary hypertension program from Texas Children's Hospital. In this episode, Dr. Varghese discusses transitioning from a pediatric PH care team to an adult medical care team. 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 | |||
| Episode 512 - Jimmy Ford, MD | 17 Mar 2025 | 00:13:55 | |
Jimmy Ford, MD discusses the 7th World Symposium on Pulmonary Hypertension and his work on the Exploring the Patient Perspective in PH Task Force. This Special Edition episode Sponsored by: Johnson & Johnson 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 | |||
| Episode 412 - Roberta Keller, MD | 24 Apr 2023 | 00:11:20 | |
Roberta Keller, MD is a neonatologist, an expert in caring for critically ill newborns, and a member of the multidisciplinary pediatric pulmonary hypertension team from UCSF’s Benioff Children’s Hospital. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate | |||
| Episode 411 - Steven Abman, MD | 17 Apr 2023 | 00:10:50 | |
Dr. Steven Abman is Professor of Pediatrics-Pulmonary Medicine and Director of the Pediatric Heart Lung Center (PHLC) at the University of Colorado Denver Anschutz School of Medicine and Children’s Hospital Colorado. In this episode, Dr. Abman gives an overview of The Pediatric Pulmonary Hypertension Network (PPHNet), a network of clinical specialists, researchers, and centers bringing a collaborative and multidisciplinary approach to improving care for children with pulmonary vascular disease. He also discusses takeaways from the 15th International Neonatal & Childhood Pulmonary Vascular Disease Conference. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate | |||
| Episode 410 - Shannin Strom | 10 Apr 2023 | 00:07:44 | |
Pediatric PH Caregiver Shannin Strom discusses navigating her daughter Zoe's pulmonary hypertension disease and the importance of IEPs (both medically and educationally) in Zoe's academic career. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate | |||
| Episode 409 - Dr. Bernard Thébaud | 03 Apr 2023 | 00:05:08 | |
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/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate | |||
| Episode 408 - Danny Thomas | 20 Mar 2023 | 00:15:27 | |
In this episode, longterm pulmonary hypertension survivor, Danny Thomas, discuss transitioning into adulthood with PH, navigating relationships, fatherhood, and the power of a positive mental approach to his 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 | |||
| Episode 407 - Kori Siroky | 13 Mar 2023 | 00:21:21 | |
In this episode, pediatric pulmonary hypertension caregiver, Kori Siroky, gives a raw and emotional account of her daughter Lilly's 13 year battle with PH. This interview was conducted on the 4th anniversary of Lillyanna's passing. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate | |||
| Episode 406 - Kristine Setser | 06 Mar 2023 | 00:13:38 | |
In this episode, PAH and CTEPH patient, Kristine Setser details her PAH diagnosis and her rare, life-saving thromboendarterectomy surgery which she believed to be was her only shot at life. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate | |||
| Episode 405 - Rosemary Graham | 27 Feb 2023 | 00:09:02 | |
Pulmonary hypertension and lupus patient, Rosemary Graham details her 39 year history navigating multiple rare disorders and the importance of her faith, self-care and never giving up. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate | |||
| Episode 404 - Macy Thames | 20 Feb 2023 | 00:09:39 | |
In this episode, pulmonary hypertension patient, Macy Thames discusses her PH diagnosis, her fear of not being there to see her son grow up, and the power of having not only a supportive partner, but a strong support system. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate | |||
| Episode 403 - Lindsay Thurman | 13 Feb 2023 | 00:17:12 | |
In this episode, pulmonary hypertension patient, Lindsay Thurman, shares her experience of long distance running while living with a chronic lung 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 | |||
| Episode 511 - Hap Farber, MD | 10 Mar 2025 | 00:14:44 | |
Harrison "Hap" Farber, MD gives a recap of PHenomenal Hope 2024, emphasizing its patient-centered approach to pulmonary hypertension (PH) research. He highlights patient stories, particularly Eric Borstein's inspiring journey of recovery and advocacy, and underscores the importance of patient-provider collaboration. Additionally, he addresses challenges in PH care, such as inclusivity in clinical trials, the role of AI in medicine, and the complexities of treating patients with substance use disorders. This Special Edition Episode Sponsored by: Johnson & Johnson 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 | |||
| Episode 402 - Jessica York | 06 Feb 2023 | 00:10:23 | |
In this episode, pediatric PH care partner, Jessica York, discusses the legacy of her daughter Haylee on the 3rd anniversary of her passing. 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 | |||
| Episode 401 - Cheryl Wegener | 30 Jan 2023 | 00:14:07 | |
In this episode, recorded on the 3rd anniversary of her daughter Madison's passing, Cheryl Wegener, discusses how life has changed in the three years since Madison lost her battle with PH on January 19, 2020 and why they continue to fight this terrible disease in her honor. 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 | |||
| Episode 400 - Dale Dedrick | 24 Jan 2023 | 00:12:33 | |
Dale Dedrick is a retired orthopedic surgeon who was diagnosed with lupus and pulmonary hypertension. In this episode, Dale, former United States Paralympic Equestrian Team member, discusses an infection that resulted in a partial amputation of her foot and why it's important "to get back on the horse." 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 | |||
| Episode 399 - Roslyn Rivera, RN, BSN | 16 Jan 2023 | 00:10:02 | |
Roslyn Rivera, RN, BSN is the Fetal and Pediatric Cardiology Outpatient Nurse Coordinator at the UCLA Children’s Heart Center. Since 2013, Roslyn has volunteered with Camp del Corazon, a nonprofit organization offering year-round activities for children and young adults with CHD. She holds the role of Nurse Coordinator and as an Advisor for their adult CHD program called PACE. In this episode, Roslyn discusses the work of Camp del Corazon and its lasting impact on children and families affected by CHD and Pulmonary Hypertension. PH kiddos and parents -- Sign up now for @campdelcorazon Summer Camp 2023 (Aug 17-29). Learn more at: https://www.campdelcorazon.org/camp 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 | |||
| Episode 398 - Hilary DuBrock, MD | 09 Jan 2023 | 00:08:06 | |
In this episode, pulmonologist and PH clinician from the Mayo Clinic, Hilary DuBrock, MD discusses portopulmonary hypertension, a type of pulmonary arterial hypertension that develops in the setting of portal hypertension and liver 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 #phawaremd | |||
| Episode 397 - Hilary DuBrock, MD | 19 Dec 2022 | 00:07:51 | |
In this episode, pulmonologist and PH clinician from the Mayo Clinic, Hilary DuBrock, MD reflects on the impact the COVID-19 pandemic has had on her clinical pulmonary hypertension practice both in the outpatient and the inpatient setting. 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 | |||
| Episode 396 - Becky Mack | 12 Dec 2022 | 00:10:11 | |
In this episode, pulmonary hypertension patient, Becky Mack discusses navigating her rare disease diagnosis right after losing her husband to cancer. She also shares her story of adoption and motherhood. 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 | |||
| Episode 395 - Cat Macera | 05 Dec 2022 | 00:07:48 | |
In this episode, pulmonary hypertension patient, Cat Macera, discusses her diagnosis that happened during Covid and how her background in the medical field helped her become a strong advocate for herself and 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 | |||
| Episode 394 - Annie Whitaker | 28 Nov 2022 | 00:26:06 | |
In this episode, PHA Australia CEO, Annie Whitaker, gives a raw account of her connection to pulmonary Hypertension as carer to her son Tim, who lost the PH War in 2006. Annie discusses how one promise to her son has helped her work through grief. 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 | |||
| Episode 393 - Stacey McCarthy | 21 Nov 2022 | 00:10:13 | |
In this episode, pulmonary Hypertension patient, Stacey McCarthy discusses her 13 year journey with PH and her struggles as a single mom. Now over a decade later, Stacey is a coordinator for the UCSD PH Support Group, is involved in a long-term study with the NIH and is a patient advocate for Janssen. 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 | |||
| Episode 510 - Drs. Kevin and Heather Shannon | 03 Mar 2025 | 00:22:16 | |
Co-Founder and Board Member, Drs. Kevin and Heather Shannon share the inspiring story of Camp del Corazon — a transformative summer camp for children with heart disease. Hear how one patient’s journey ignited a movement to create a safe, empowering space where kids can embrace their scars, form lifelong friendships, and experience the joy of camp without limits. #galadelsol #campdelcorazon #heartcamp #camplove PH Kiddos 7-17: Applications for Camp are open! Apply here. (Be sure to note Lucas Van Wormer in the application!) Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com | |||
| Episode 392 - Katie Coman | 14 Nov 2022 | 00:15:36 | |
In this episode, attorney Katie Coman discusses losing her husband to complications following a bone-marrow transplant. Two years later, while still in mourning, this single-mother from Long Beach, California was diagnosed with Ideopathic 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 | |||
| Episode 391 - Evelyn Melendez | 07 Nov 2022 | 00:11:41 | |
In this episode, former pulmonary hypertension patient, Evelyn Melendez discusses her recent lung transplant surgery and her road to recovery. 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 | |||
| Episode 390 - Paige Zils and Lindsey Doolan | 02 Nov 2022 | 00:13:16 | |
In this episode, pulmonary hypertension patient and @PHatStanford #RaceAgainstPH 2022 Pediatric PH Courage Award recipient, Paige Zils (10) and her mother Lindsey Doolan, discuss Paige's PH diagnosis and the importance of a great care team. Don't miss the 22nd Annual Race Against PH at November 22 hosted by the Vera Moulton Wall Center for Pulmonary Vascular Disease at Stanford. Click here to learn more. 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 | |||
| Episode 389 - Yolanda Villalon | 31 Oct 2022 | 00:12:14 | |
In this episode, pulmonary hypertension patient and Stanford's Race Against PH 2022 Adult PH Courage Award recipient, Yolanda Villalon, discusses her devastating diagnosis and the impact on finding the right support group. Don't miss the 22nd Annual Race Against PH at November 22 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 Share your story: info@phaware.com | |||
| Episode 388 - Graydon Cawein | 24 Oct 2022 | 00:06:54 | |
In this episode, pulmonary hypertension patient and Stanford's Race Against PH 2021 Adult PH Courage Award recipient, Graydon Cawein, discusses his long road to his rare disease diagnosis, survivor's guilt, and the importance of finding an expert treatment center. Don't miss the 22nd Annual Race Against PH at November 22 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 Share your story: info@phaware.com | |||
| Episode 387 - Roslyn Rivera, RN, BSN | 17 Oct 2022 | 00:10:45 | |
Roslyn Rivera, RN, BSN is the Fetal and Pediatric Cardiology Outpatient Nurse Coordinator at the UCLA Children’s Heart Center. Since 2013, Roslyn has volunteered with Camp del Corazon, a nonprofit organization offering year-round activities for children and young adults with CHD. She holds the role of Nurse Coordinator and as an Advisor for their adult CHD program called PACE. In this episode, Roslyn discusses the work of Camp del Corazon and its lasting impact on children and families affected by CHD and Pulmonary Hypertension. Don't miss CDC's upcoming Family Festival (FAMfest FUNdraiser) October 29th in North Hollywood, CA. You can also participate in the Online Auction (Oct 22-29, 2022). Learn more at: https://www.campdelcorazon.org/famfest @campdelcorazon 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 | |||
| Episode 386 - Karri Reynolds | 26 Sep 2022 | 00:16:59 | |
CTEPH 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.com | |||
| Episode 385 - Chandani DeZure, MD Part 2 | 19 Sep 2022 | 00:07:39 | |
In 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.com | |||
| Episode 384 - Chandani DeZure, MD Part 1 | 12 Sep 2022 | 00:09:42 | |
In 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.com | |||
| Episode 383 - Shannon O'Donnell | 05 Sep 2022 | 00:06:33 | |
Pulmonary 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.com | |||
| Episode 509 - Jen Cueva | 24 Feb 2025 | 00:13:28 | |
Jen Cueva, a pulmonary hypertension patient of almost two decades, discusses her diagnosis, her advocacy work, and how she uses writing to support the pulmonary hypertension community. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com. @PulmonaryNews | |||
| Episode 382 - Larissa Domenichelli | 29 Aug 2022 | 00:07:16 | |
In 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.com | |||
| Episode 381 - Tina Gardner | 22 Aug 2022 | 00:09:47 | |
Pulmonary 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, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials Share your story: info@phaware.com | |||
| Episode 380 - Nicole Hogan | 15 Aug 2022 | 00:06:45 | |
Pulmonary 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.com | |||