Best Raredisease Podcasts (2023)

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Living With PSC

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Going Through a Liver Transplant: A Conversation Between a Husband & Wife 41:34

18h ago41:34

41:34

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to fi…

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

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Episode 432 - Jennifer Gendron 12:43

3d ago12:43

12:43

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:…

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

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Episode 431 - Don Downey 9:06

10d ago9:06

9:06

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…

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

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Episode 430 - Carol Doyle Ploughman 14:57

17d ago14:57

14:57

15 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 pulmonar…

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

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Episode 429 - Colleen Carroll 6:45

24d ago6:45

6:45

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/clini…

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

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Episode 428 - Jane Macleod 6:54

1M ago6:54

6:54

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:…

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Living With PSC

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Post-Liver Transplant Recurrence of PSC: A Conversation with Dr. Palak Trivedi 40:54

1M ago40:54

40:54

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to fi…

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

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Episode 427 - Vanda McLean 10:50

1M ago10:50

10:50

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:…

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

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Episode 426 - Jas James 6:14

2M ago6:14

6:14

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…

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

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Episode 425 - Susan Cosenzo 10:38

2M ago10:38

10:38

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 #ph…

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

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Episode 424 - Kaitlyn Salonga 8:35

2M ago8:35

8:35

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 @ph…

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

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Episode 423 - Jane Sernoskie 5:38

2M ago5:38

5:38

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…

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

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Episode 422 - Kristine Ritchie 11:16

2M ago11:16

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.g…

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

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Episode 421 - Eric Austin, MD 16:10

3M ago16:10

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 s…

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

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Episode 420 - Lew Romer, MD 15:52

3M ago15:52

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 pulmona…

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

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Episode 419 - Brin Marks 10:02

3M ago10:02

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 …

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

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Episode 418 - Sanjay Mehta, MD 15:49

4M ago15:49

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 Conferenc…

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

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Episode 417 - Nicole Dempsey 6:42

4M ago6:42

6:42

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 Confer…

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Living With PSC

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When Your Husband is Your Living Liver Donor: A Conversation with Jessica and Ian Travis 33:41

4M ago33:41

33:41

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to fi…

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

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Episode 416 - Katharine Clapham, MD 8:51

4M ago8:51

8:51

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 Enga…

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

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Episode 415 - Uli Campbell 7:08

4M ago7:08

7:08

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…

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

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Episode 414 - Elise Whalen, MSN, APRN 7:52

5M ago7:52

7:52

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 hyper…

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

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Episode 413 - Nidhy P. Varghese, MD 18:45

5M ago18:45

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/clinicaltr…

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

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Episode 412 - Roberta Keller, MD 11:20

5M ago11:20

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. In this episode, Dr. Keller discusses the broadening scope of children with PH and how clinical treatment has evolved. Learn more about pulmonary…

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Living With PSC

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Improving PSC Diagnosis, Expediting Research, Facilitating Clinical Trials, & more: A Conversation with Dr. Laura Cristoferi 25:03

5M ago25:03

25:03

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to fi…

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

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Episode 411 - Steven Abman, MD 10:50

5M ago10:50

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 speciali…

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

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Episode 410 - Shannin Strom 7:44

5M ago7:44

7:44

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/do…

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

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Episode 409 - Dr. Bernard Thébaud 5:08

6M ago5:08

5:08

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 Easter…

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

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Episode 408 - Danny Thomas 15:27

6M ago15:27

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 c…

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

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Episode 407 - Kori Siroky 21:21

6M ago21:21

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 Enga…

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

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Episode 406 - Kristine Setser 13:38

7M ago13:38

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 #…

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

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Episode 405 - Rosemary Graham 9:02

7M ago9:02

9:02

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 #phawa…

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

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Episode 404 - Macy Thames 9:39

7M ago9:39

9:39

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 …

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

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Episode 403 - Lindsay Thurman 17:12

7M ago17:12

17:12

In this episode, pulmonary hypertension patient, Lindsay Thurman, shares her experience of long distance running while living with a chronic lung disease. Follow Lindsay's Running with PAH blog page on facebook. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.p…

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

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Episode 402 - Jessica York 10:23

8M ago10:23

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. You can participate in Hay's 3rd Heaven Day Saturday Feb 11, 2021. Details here. You can also follow the Legacy of Hay page on facebook. Learn more about pulmonary hypertension trials at www.phaware.global/cli…

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

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Episode 401 - Cheryl Wegener 14:07

8M ago14:07

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. You can also read more about Madison on her CaringBridge page. Learn more a…

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

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Episode 400 - Dale Dedrick 12:33

8M ago12:33

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 trial…

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Living With PSC

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Benefits of Drug Repurposing for Rare Diseases: A Conversation with Ania Korsunska, Castleman Disease Collaborative Network 33:00

8M ago33:00

33:00

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to fi…

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

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Episode 399 - Roslyn Rivera, RN, BSN 10:02

8M ago10:02

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 a…

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

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Episode 398 - Hilary DuBrock, MD 8:06

8M ago8:06

8:06

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 @pha…

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

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Episode 397 - Hilary DuBrock, MD 7:51

9M ago7:51

7:51

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 @phaw…

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

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Episode 396 - Becky Mack 10:11

9M ago10:11

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.g…

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

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Episode 395 - Cat Macera 7:48

10M ago7:48

7:48

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: w…

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

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Episode 394 - Annie Whitaker 26:06

10M ago26:06

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 soci…

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

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Episode 393 - Stacey McCarthy 10:13

10M ago10:13

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 …

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

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Episode 392 - Katie Sample 15:36

10M ago15:36

15:36

In this episode, attorney Katie Sample 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. F…

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Living With PSC

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Identifying and Mitigating Health Inequalities in PSC: A Discussion with Dr. Kidist Yimam 26:09

11M ago26:09

26:09

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to fi…

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

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Episode 391 - Evelyn Melendez 11:41

11M ago11:41

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…

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

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Episode 390 - Paige Zils and Lindsey Doolan 13:16

11M ago13:16

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 Pulmonar…

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

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Episode 389 - Yolanda Villalon 12:14

11M ago12:14

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…

Podcasts Worth a Listen

Raredisease Podcasts

Podcasts Worth a Listen

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