Best Undiagnosed Disease Podcasts (2024)

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LISTEN AGAIN: Could Your Undiagnosed Symptoms be a Thyroid Condition? | Denise Roguz 28:50

14h ago28:50

28:50

Originally published January 25, 2021 Whether you know you have a thyroid condition or have symptoms you can't seem to find the right answers to resolve them, this episode is for you. Denise Roguz is the co-founder, owner, and operator of ThyroidChange. It is a collaborative network, health information website, and social media campaign. It unites …

1
Episode 477 - Marilyn Hanft 9:51

5h ago9:51

9:51

Marilyn Hanft, a CTEPH patient, shares her experience with the condition. In 2011, she initially mistook her symptoms for asthma but later discovered she had clots in her lungs. Despite her health challenges, she remains determined to live life to the fullest. Hanft discusses her love for sailing and her current plan for writing a book about her sa…

1
130: An Interview With Kevin M. Flanigan, MD, Director of the Center for Gene Therapy at Nationwide Children's Hospital in Columbus, Ohio 10:06

2d ago10:06

10:06

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Kevin M. Flanigan, MD, director of the Center for Gene Therapy at the Abigail Wexner Research Instute of Nationwide Children’s Hospital in Columbus, Ohio. The subject of our talk is exon skipping therapies for Duchenne muscular dystrophy.…

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Debunking PCOS Misconceptions | Dr. Jerilynn Prior 43:21

4d ago43:21

43:21

Originally Released April 5, 2022 PCOS impacts 1 in 10 women yet it is still underdiagnosed and misdiagnosed. Dr. Jerilynn Prior, of the Centre for Menstrual Cycle and Ovulation Research (CeMCOR), is a Professor of Endocrinology and Metabolism at the University of British Columbia, with 40 years experience in women’s health. She brings an interesti…

1
Episode 476 - Scott Fleetwood 12:41

5d ago12:41

12:41

Scott Fleetwood, a former pulmonary hypertension patient from Buffalo, New York, shares his journey with rare diseases. He initially experienced shortness of breath while playing hockey and was later diagnosed with pulmonary hypertension and scleroderma. Scott received a double lung transplant in 2017. He discusses the initial fear he felt upon lea…

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Cracking the Code of Vaginal Health: An Expert's Take on the Microbiome | Dr. Caroline Mitchell 43:43

15d ago43:43

43:43

Originally published March 12, 2024 Learn how your vaginal flora and gut microbiome contribute to your reproductive health. Dr. Caroline Mitchell shares her expertise and research on this important but overlooked topic. Episode Summary In this episode, we take an in-depth look at the delicate balance of the vaginal microbiome. Dr. Caroline Mitchell…

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129: An Interview With Durresamin Khan, Pakistani Mother of a Boy With Duchenne Muscular Dystrophy 8:31

12d ago8:31

8:31

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Durresamin Khan, the Pakistani mother of a boy with Duchenne muscular dystrophy, about the difficulties of obtaining treatment for DMD patients who are ineligible for gene therapy.By Rare Care Podcast

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Episode 475 - Robert Frantz, MD 7:41

12d ago7:41

7:41

In this episode, Dr. Robert Frantz, a cardiologist at the Mayo Clinic, discusses current and upcoming clinical research in pulmonary arterial hypertension (PAH). He emphasizes the low participation rate of PAH patients in clinical trials and encourages patients to consider participating, as it not only benefits themselves but also helps advance med…

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128: An Interview With Jenny Huang, Mother of SMA Patient and MIT Math Whiz Benjamin Lou 15:00

16d ago15:00

15:00

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Jenny Huang, whose son, Benjamin Lou, is an award-winning math major at MIT who also has spinal muscular atrophy.By Rare Care Podcast

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Top Three Options for Breast Reconstruction

19d ago

—

Maria Helena Lima, M.D., discusses the latest breast reconstruction options, including implants, autologous tissue flaps, and oncoplastic reconstruction. She also addresses patient safety concerns and the efficacy of silicone implants compared their saline counterparts.By UAB

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Hormonal Birth Control and Brain Health: A Discussion | Sarah E. Hill, PhD 59:00

19d ago59:00

59:00

Originally published October 3, 2023 Dr. Sarah E. Hill, PhD is a research psychologist and expert in the effects of birth control on women’s lives. She is the author of the book, "This is Your Brain on Birth Control" and has dedicated her research to uncovering the science behind hormonal birth control and its potential impacts. In this episode, Dr…

1
Episode 474 - Amy Gietzen 11:51

19d ago11:51

11:51

Amy Gietzen, a patient diagnosed with systemic scleroderma, shares her journey and experiences living with the disease. She discusses her initial symptoms, the shock of the diagnosis, and the lack of information and resources available at the time. Despite facing numerous challenges, including pulmonary fibrosis and pulmonary arterial hypertension,…

1
Alternate Paths to Recovery: Keelia Ryan on Sacred Healing with Plant Medicine 39:45

23d ago39:45

39:45

This week on Minds on Mushrooms, I had the honor of hosting Keelia Ryan, the visionary founder of Plant-Allied Recovery. This unique program is dedicated to supporting individuals in recovery through the sacred and intentional use of entheogenic plant and fungi medicines. Keelia opens up about her own journey, sharing how a deeply traumatic past le…

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127: An Interview With Omer Abdul Hamid, MD, of Nemours Children's Hospital in Orlando, Florida 14:02

26d ago14:02

14:02

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Omer Abdul Hamid, MD, a neurologist at Nemours Children's Hospital in Orlando, Florida, on gene therapy's potential to treat Duchenne muscular dystrophy.By Rare Care Podcast

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Metabolism Health and Menopause | Dr. Lara Briden 43:47

26d ago43:47

43:47

How are metabolism, health, and menopause linked? Listen as Dr. Lara Briden shares insights from her new book, Metabolism Repair for Women. Episode Summary In this episode, we hear from Dr. Lara Briden, naturopathic doctor and celebrated author of “Period Repair Manual.” Dr. Briden joins Fempower Heath to discuss metabolic health in light of her ne…

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Episode 473 - Alvin Rocha MSN RN CPN PHN 10:18

26d ago10:18

10:18

Alvin Rocha is a nurse care manager and pulmonary hypertension coordinator at Children's Hospital Los Angeles. He manages PH patients from birth to early adulthood. His main goal is to prepare these patients for the transition into the adult world. He is excited about the advancements in therapies and clinical trials and looks forward to attending …

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Validating Pain: Endometriosis, Periods, and Women’s Wellness | Dr Peta Wright 40:15

1M ago40:15

40:15

Episode was first played on November 29, 2022 - In this episode, Fempower Health interviews Dr. Peta Wright about endometriosis and pelvic pain. Dr. Wright is a gynecologist, fertility specialist, and the founder of Vera Women’s Wellness: a whole woman's approach to endometriosis healing and recovery. Together, they discuss endometriosis surgery, t…

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126: An Interview With Pamela Gavin, New CEO of the National Organization for Rare Disorders (NORD) 14:23

1M ago14:23

14:23

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Pamela Gavin, the newly appointed CEO of the National Organization for Rare Disorders (NORD).By Rare Care Podcast

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Episode 472 - Dunbar Ivy, MD 6:00

1M ago6:00

6:00

In this episode, Dr. Dunbar Ivy, a pediatric cardiologist at the University of Colorado, discusses the upcoming World Symposium on Pulmonary Hypertension, where experts from around the world will gather to discuss the progress made and future directions. Dr. Ivy highlights the work of the pediatric pulmonary hypertension task force, which aims to d…

1
Multidisciplinary Consensus in Diagnosis and Treatment Options of Spontaneous Intracranial Hypotension

1M ago

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Severe orthostatic headaches could indicate a serious condition called spontaneous intracranial hypotension (SIH). Neurologist Will Meador, M.D., and interventional neuroradiologist Jesse Jones, M.D., discuss how they interpret a combination of symptoms and imaging to make diagnoses and the common first-line treatments for cases that do not resolve…

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Autoimmune Awakening: Kris Kufner's Healing Journey with Psychedelics 50:53

1M ago50:53

50:53

In this episode of Minds on Mushrooms, we explore the remarkable healing journey of Kris Kufner, who endured years of debilitating symptoms from an autoimmune condition without understanding its true cause. As her health deteriorated, Kris had to step away from her career to make her well-being a full-time priority. This challenging path led her to…

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Women’s Mental Health: Tackling Menopause and Perimenopause | Dr. Allie Sharma 38:30

1M ago38:30

38:30

Learn about menopause and mental health from clinical psychologist Dr. Allie Sharma on the Fempower Health Podcast. Episode Summary While menopause is assumed to come with hot flashes and menstrual changes, there are also mental effects of menopause that are less commonly discussed. In this episode, Dr. Allie Sharma—a clinical psychiatrist speciali…

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125: An Interview With Patricia Weltin, Founder and CEO of Beyond The Diagnosis 17:59

1M ago17:59

17:59

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Patricia Weltin,founder and CEO of Beyond the Diagnosis—a nonprofit that uses art to raise public awareness of children with ultra-rare diseases.By Rare Care Podcast

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Episode 471 - Nola Martin 14:17

1M ago14:17

14:17

Nola Martin shares her experience with pulmonary arterial hypertension (PAH). Nola describes the physical and mental challenges she faced, including fatigue, weight gain, and the need to ask for help. Nola emphasizes the importance of self-advocacy and fighting for one's own health. She recounts a situation where she had to push her doctor to liste…

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Innovative Robotic Coronary Artery Bypass (CABG) Surgery Offers Patients Faster Recovery

1M ago

—

Learn why robotic-assisted CABG is a groundbreaking technique for many with coronary artery disease. Sasha Still, M.D., a cardiothoracic surgeon, describes the advantages of performing robotic-assisted coronary artery bypass — a minimally invasive version of the traditional CABG procedure that can further be performed on a beating heart. She discus…

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AHA HCM Clinical Update: 2024 Guideline for Management of Hypertrophic Cardiomyopathy 1:05:24

1M ago1:05:24

1:05:24

In this On Demand video, Dr. Steve Ommen and Dr. Carolyn Ho discuss recent updates to the 2024 Guideline for the Management of Hypertrophic Cardiomyopathy (HCM). Watch now to enhance your knowledge on the importance of shared decision-making, the use of cardiac myosin inhibitors to treat symptomatic obstructive HCM, and risk stratification for atri…

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125: An Interview With Sarah Glass, PhD, of the n-Lorem Foundation 16:36

2M ago16:36

16:36

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sarah Glass, PhD, chief operating officer of the n-Lorem Foundation—and the mother of a boy with an ultra-rare disease.By Rare Care Podcast

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124: An Interview with Dimitrios Karussis, MD, PhD, on Stem Cell Therapy for Multiple Sclerosis 14:47

2M ago14:47

14:47

By Rare Care Podcast

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Beyond Reproduction: The Broader Health Impacts of Estrogen and Progesterone | Dr. Jerilynn Prior 32:03

2M ago32:03

32:03

Originally Published October 25, 2021. Inspired by an upcoming episode with Dr Prior about perimenopause, specifically, I thought it important to revisit the need to understand the important roles of BOTH estrogen AND progesterone. We’ve all been told about the powerful effects of estrogen on a woman’s reproductive cycle. But more people are now le…

1
Episode 470 - Eric Austin, MD 12:42

2M ago12:42

12:42

In this episode, Dr. Eric Austin, a pediatric pulmonologist and pulmonary hypertension doctor, discusses the upcoming World Symposium on Pulmonary Hypertension, which will focus on various aspects of pulmonary hypertension research and clinical care. Dr. Austin is part of the task force on genetics and genomics, which aims to explore the genetic la…

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Pain Relief for Endometriosis | Dr. Allyson Shrikhande 30:40

2M ago30:40

30:40

Are there ways to find pain relief for endometriosis? Listen as Dr. Allyson Shrikhande shares her expert insights on a whole-person approach to pain management. Episode Summary In this episode of Fempower Health, Georgie Kovacs hosts Dr. Allyson Shrikhande, a specialist in pelvic rehabilitation medicine. They explore the important topic of managing…

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Episode 469 - Victoria McKinnon 16:22

2M ago16:22

16:22

Victoria McKinnon shares her personal experience with pulmonary hypertension, specifically her son Owen’s eight week battle with the condition. Owen was diagnosed with alveolar capillary dysplasia (ACD), a genetic disease that causes pulmonary hypertension. Despite initial improvements, they ran out of treatment options and ultimately had to make t…

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Left Atrial Appendage Occlusion Devices and Procedures

2M ago

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Two devices for preventing blood clots are allowing many patients to stop taking blood thinners completely. The Amulet and the Watchman are both devices that allow doctors to perform left atrial appendage occlusion more safely than ever before. Tom McElderry, M.D., co-director of the Heart & Vascular Center, explains what has made these devices eas…

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123: An Interview With Mary Morlino, Patient Navigator at the Undiagnosed Diseases Network Foundation 11:15

2M ago11:15

11:15

Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Mary Morlino, who has sarcoidosis and is the patient navigator for the Undiagnosed Diseases Network Foundation.By Rare Care Podcast

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Demystifying Mushrooms: A Journey with Troop Mushroom Gummies Co-Founders, Steph and Jake 35:29

2M ago35:29

35:29

In this week’s Minds on Mushrooms episode, we dive deep into the world of fungi with cousins, best friends and the co-founders of Troop Mushroom Gummies, Jake and Steph. In their mission to demystify mushrooms and make them more approachable, they reveal personal stories and insights that shed light on the profound benefits these magical organisms …

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Pelvic Floor After Hysterectomy: Preparation, Treatment, and Management | Dr. Jocelyn Wallace 38:53

2M ago38:53

38:53

Learn about the pelvic floor after hysterectomy as Dr. Jocelyn Wallace, Doctor of Physical Therapy and pelvic floor specialist, shares her insights. Episode Summary In this episode, Dr. Jocelyn Wallace, a Doctor of Physical Therapy and pelvic floor specialist, discusses the importance of the pelvic floor in women's health. She sheds light on the pe…

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Episode 468 - Wolf Haley 11:57

2M ago11:57

11:57

Haley (aka @Wolf Haley), who was diagnosed with pulmonary hypertension (PH) at 18 years old, shares her journey with the disease and how she has found healing and purpose through art and advocacy. Haley discovered her passion for art as a form of therapy, using watercolor to express her thoughts and emotions about living with PH. Haley also works a…

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Finding Comfort within the Unknown: Hope, Boundaries, and Beyond 1:12:15

2M ago1:12:15

1:12:15

Welcome back to the Rare Matters Podcast! I'm your host, Mikey Stone, and in this episode, we embark on a journey through the intricate landscape of life as a disabled individual. Join me as I candidly share my personal experiences, insights, and hard-won wisdom, offering a glimpse into the challenges and triumphs that shape my everyday existence. …

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122: An Interview WIth Tracy Sharp, a Patient With Lambert-Eaton Myasthenic Syndrome 13:46

2M ago13:46

13:46

By Rare Care Podcast

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Life Before and After Hysterectomy | Dr. Zoe Rodriguez 37:52

2M ago37:52

37:52

Listen as Dr. Zoe Rodriguez shares her medical and patient-advocating expertise about life before and after hysterectomy. Episode Summary Join Fempower Health as we discuss hysterectomies with Dr. Zoe Rodriguez, the Assistant Professor of Obstetrics, Gynecology, and Reproductive Science at the Icahn School of Medicine at Mount Sinai. In this episod…

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