Best Voice Of Rare Disease Podcasts (2024)

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Midlife, Menopause, and Rediscovering Sexuality | Dr. Kelly Casperson - Fempower Health: The Perimenopause and Menopause Channel 47:27

6h ago47:27

47:27

Discover how menopause can be a time of sexual rediscovery. Dr. Kelly Casperson shares insights on midlife sexuality, debunking myths, and how to navigate changes in desire, intimacy, and sexual health. Reclaiming Midlife Sexuality Episode Summary In this empowering episode of *Fempower Health*, we explore the intersection of menopause, sexuality, …

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Why Is Sex Painful? Let’s Talk Rare Causes! | Dr. Alexandra Dubinskaya 48:34

3d ago48:34

48:34

Discover the rare-ish causes of pain during sex with expert insights from Dr. Alexandra Dubinskaya. Learn about the impact of hormonal changes, birth control, vaginal cysts, lichen sclerosus, and effective treatments. Whether you're experiencing painful sex or looking to support patients, this episode offers valuable information on women’s sexual h…

1
Dysmenorrhea & Pelvic Pain: Endometriosis, Adenomyosis & Other Causes 50:42

21d ago50:42

50:42

Originally Released March 1, 2022 Episode Summary: In this episode, we dive deep into the topic of dysmenorrhea, pelvic pain, endometriosis, adenomyosis, and other related conditions with Dr. Dan Martin, Medical and Scientific Director for the Endometriosis Foundation of America. We explore the complexities of diagnosing and treating pelvic pain, t…

1
How Posture & Pelvic Structure Affect Chronic Pelvic Pain | Angie Mueller, DPT 48:47

1M ago48:47

48:47

Learn how your pelvic structure, including postures and organ position, might be contributing to pelvic pain and pelvic floor conditions. Pelvic Structure and Pelvic Pain Relief Episode Summary In this episode, Dr. Angie Mueller—a doctor of physical therapy specializing in women's pelvic health—sheds light on how structural changes in the body, par…

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The patient journey | Sickle cell disease 31:56

2M ago31:56

31:56

In this episode, Tyler Piazza, BD Director at FIECON, hosts an insightful interview with Kevin Wake, CMR, CHW, M.S., a sickle cell disease patient advocacy leader and a health outcomes industry expert. Kevin, who was diagnosed with sickle cell disease at nine months old, is now the president of URIEL E OWENS SICKLE CELL DISEASE ASSOCIATION OF THE M…

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The patient journey | Metastatic breast cancer 41:38

3M ago41:38

41:38

In this episode Karl Freemyer, BD director at FIECON, is speaking with Emma Chaffin about her experience living with the metastatic breast cancer as a biopharmaceutical executive. Emma is a resilient breast cancer survivor who was diagnosed with stage 4 breast cancer five years ago at the age of 41. Facing a daunting prognosis and a treatment plan …

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Beyond Reproduction: The Broader Health Impacts of Estrogen and Progesterone | Dr. Jerilynn Prior 32:28

4M ago32:28

32:28

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
The Unsung Heroes: Siblings Caring for Loved Ones with Rare Diseases 43:14

4M ago43:14

43:14

I Care for Rare is a podcast for parents and families of people living with rare diseases. It’s co-hosted by Sherrilynne Starkie and Sandra Markus, the visionary behind the I Care for Rare campaign and its mission to create a collective voice for individuals, families, and caregivers living with rare diseases, inspired by her experience caring for …

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Pain Relief for Endometriosis | Dr. Allyson Shrikhande 31:05

4M ago31:05

31:05

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…

1
Pelvic Floor After Hysterectomy: Preparation, Treatment, and Management | Dr. Jocelyn Wallace 39:19

4M ago39:19

39:19

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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Life Before and After Hysterectomy | Dr. Zoe Rodriguez 38:17

5M ago38:17

38:17

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…

1
Here’s how the University of Utah will showcase using AI responsibly 20:41

4M ago20:41

20:41

The University of Utah has long been at the center of revolutions in technology, from development of the internet to innovations in graphic computing. Now the U is poised to take the same leading role with artificial intelligence. In this episode of U Rising, host Chris Nelson talks to Professor Manish Parashar, who is overseeing the university's R…

1
Powering Through Adversity: Personal Trainer Shaun Kehoe’s Journey from Brain Surgery to Fitness Advocate 32:21

5M ago32:21

32:21

The I Care for Rare podcast reveals the challenges faced by the families caring for people who have a rare health condition, In this episode we delve into the challenging world of rare diseases with Sandra Markus, founder of iCare4Rare, and Shaun Kehoe, a certified personal trainer with a remarkable journey of his own. Zach, Sandra’s adult son with…

1
Pro Bono Initiative: Serving our community with free legal help 25:50

5M ago25:50

25:50

The Pro Bono Initiative at the University of Utah’s S.J. Quinney College of Law provides free legal help with a broad range of topics—and also has a new program assisting incarcerated Utahns at the Utah State Correctional Facility with civil law problems. Caisa Royer, program director, talks with host Chris Nelson about how the program works and th…

1
This powerful tool helps you treat other people with less contempt and more respect — especially when you disagree 27:51

5M ago27:51

27:51

Tim Shriver created The Dignity Index to shift how we interact with other people in all facets of life — from public and political conversations to engaging with those who are different from us or who hold views we don’t share. In this episode of U Rising, Shriver talks with host Chris Nelson about how the index was developed and then refined here …

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Chronic Pelvic Pain: Could It Be Pelvic Congestion Syndrome? | Dr. Mari Tassarotti 39:57

6M ago39:57

39:57

Women with pelvic congestion syndrome experience chronic pelvic pain pelvic varicose veins, and more. Learn about this underrecognized condition from Dr. Mari Tassarotti. Episode Summary In this episode of Fempower Health, we’re joined by Dr. Mari Tassarotti, an expert in interventional radiology from Columbia University. We discuss the complexitie…

1
Breakthroughs await: This research lab seeks treatments for rare diseases 27:43

6M ago27:43

27:43

Rare diseases often don't get much attention because they're just that — rare. Each one affects fewer than 200,000 people in the U.S., but collectively, they're surprisingly common. And there are no treatments available for the majority of these diseases. In this episode of U Rising, host Julie Kiefer talks with Jill Hawkins, who has two children w…

1
University of Utah Health has a national role in tracking prescription drug shortages 17:26

6M ago17:26

17:26

U of U Health tracks and provides data on prescription drug shortages to the American Society of Health System Pharmacists website, one of just two sites dedicated to prescription drug shortages. Erin Fox, an adjunct professor of pharmacy and associate chief pharmacy officer at University of Utah Health, oversees that effort and is the go-to expert…

1
Encore Presentation: Exciting Genetic Discoveries Lead to Life-Changing CMT Therapies with Dr. Stephan Züchner 47:10

6M ago47:10

47:10

In this special replay, we revisit the riveting conversation with Dr. Stephan Züchner, a beacon of hope in the realm of genetic research for Charcot-Marie-Tooth (CMT) disease. As the chair of the Department of Human Genetics at the University of Miami Miller School of Medicine, Dr. Züchner has been at the forefront of groundbreaking discoveries tha…

1
How to Find Chemical Free Products and Ingredients | Amy Ziff of MADE SAFE 54:33

6M ago54:33

54:33

How do you know which products and ingredients are safe to use? Are nontoxic ingredients also eco-friendly? In this episode, we interview Amy Ziff, founder of MADE SAFE: the first human health and eco-friendly nontoxic certification program. Amy shares why nontoxic options are so important to health and the planet, where to find affordable chemical…

1
U Career Success helps students get their careers off to a strong start 25:36

6M ago25:36

25:36

There is an ongoing national conversation right now about the value of higher education. One measure we use when we talk about the value of a degree from the University of Utah is job placement. And by that we mean the job opportunities and starting salaries our graduates receive. Host Chris Nelson talks with Katie Abby, vice president for U Career…

1
The Role Your Vaginal Flora Plays in a Healthy Microbiome | Dr. Caroline Mitchell 44:09

6M ago44:09

44:09

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, distinguished reproductive health …

1
University of Utah Health is bringing world-class medical care to Rose Park, West Valley and Utah County 31:16

7M ago31:16

31:16

The University of Utah has announced three major projects that greatly increase the reach of health care that University of Utah Health provides. There are two new health centers on the west side of Salt Lake County and one in Utah County. U Rising host Julie Kiefer and Dr. Michael Good, senior vice president of Health Sciences and CEO of Universit…

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Endometriosis and Pelvic Health Physical Therapy | Caitlyn Tivy 47:13

7M ago47:13

47:13

Learn about endometriosis and pelvic health physical therapy to manage chronic pelvic pain. Dr. Caitlyn Tivy shares her experience and expertise to help women find relief. Episode Summary In this final episode of Fempower Health's four-part series on endometriosis, Dr. Caitlyn Tivy, a distinguished pelvic health physical therapist, shares the intri…

1
Here's what the new earthquake maps show for Utah and the U.S. 29:45

7M ago29:45

29:45

Scientists have been forecasting a big earthquake in Utah for decades and newly released earthquake maps provide an update on our risk. Seismologist Jim Pechmann, a research associate professor emeritus in the Department of Geology and Geophysics, shares insights about the new maps and what it could mean for Utah in this episode of U Rising hosted …

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Endometriosis Surgery, Recovery, and Personalized Care | Dr. Shanti Mohling 56:16

7M ago56:16

56:16

Dr. Shanti Mohling shares the details of endometriosis surgery, recovery, and pelvic floor therapy as important treatment options for patients with this condition. Episode Summary In this third episode of Fempower Health's series on endometriosis, Dr. Shanti Mohling, a minimally invasive surgeon, who devotes her clinical activity to patients with p…

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Wes Michael of Rare Patient Voice 32:09

7M ago32:09

32:09

Wes Michael is founder and president of Rare Patient Voice. He joins host Stephen V. Smith to discuss how Rare Patient Voice connects patients and caregivers with the opportunity to voice their opinions through surveys and interviews to improve medical products and services.By Stephen V. Smith

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Planting seeds: U’s Seed Library promotes health and builds community 17:13

7M ago17:13

17:13

Did you know you can “borrow” vegetable and flower seeds on our campus? Jennifer Macali, an associate professor in the College of Nursing, and Brandon Patterson, associate librarian at the Eccles Health Sciences Library, are co-founders of the University of Utah's Seed Library. In this episode of U Rising, learn all about the seed library and how y…

1
Endometriosis Care, Treatment Options, and Patient Advocacy | Katie Boyce 1:27:32

7M ago1:27:32

1:27:32

Katie Boyce shares her expert insights on endometriosis care, treatment options, and the importance of patient advocacy for long-term management. Details Episode Summary In this second episode of Fempower Health’s four-part series on endometriosis, we speak with guest Katie Boyce, a Board Certified Patient Advocate with a robust background in bioch…

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Rare Voices: Navigating Life with Uncommon Courage in Canada 31:36

7M ago31:36

31:36

On this special episode of the Pharma Podcast, we're honouring Rare Disease Month this February by delving into the personal and profound stories from the front lines of rare diseases in Canada. Our focus is on the unique challenges, healthcare experiences, and the resilience required to navigate life with a rare condition. In celebration of this i…

1
CMT Insights: Unlocking Better Mobility With Tom DuPont 42:04

7M ago42:04

42:04

Charcot-Marie-Tooth (CMT) disease comes with its set of daily mobility challenges, intensified by the search for comfortable and supportive footwear amidst nerve damage, foot weakness, and deformities. In this episode of the official podcast of the CMTA, we explore adaptive solutions that bring hope and enhanced mobility to those living with CMT. H…

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A conversation with the U's Dave Meikle on his career as a graphic designer, illustrator and award-winning landscape painter 36:03

7M ago36:03

36:03

Chances are you've seen his art on a billboard advertising Utah's beauty or in an ad for the U’s GO LEARN! program or in Wes Anderson's most recent film, “Asteroid City.” And, yes, he created U Rising’s cover art. Get to know award-winning artist Dave Meikle, the U’s artistic director, in this episode of U Rising hosted by Chris Nelson. Subscribe t…

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Innovations in Endometriosis Diagnosis, Pelvic Pain Management, and Patient Support 46:55

7M ago46:55

46:55

In this first episode of Fempower Health’s four-part series on endometriosis, Margaret Melville of Lasa Health joins to discuss this underrepresented condition. Margaret transformed her decade-long struggle with endometriosis and celiac disease into a mission to improve women’s healthcare today. She talks about the alarming shortage of OB-GYNs and …

1
Science writers Brian Maffly and Lisa Potter translate research for you 34:22

8M ago34:22

34:22

It's one thing for researchers to explain their work to an academic audience, but it's quite another to make sure their advances are easily understood by the general public and by the media. In this episode of U Rising, Julie Kiefer hosts science writers Brian Maffly and Lisa Potter, who explain how they and other writers on campus work with resear…

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Small press, big impact: Celebrating 75 years with the University of Utah Press 19:02

8M ago19:02

19:02

For the past 75 years, the University of Utah Press has brought to life books on a wide range of topics, including the language of JRR Tolkien, Utah’s food and linguistic peculiarities and the state’s environmental challenges. In this episode of U Rising, host Chris Nelson talks with Director Glenda Cotter about the history of the Press and its imp…

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Florida’s Prescription for Change: The Impact of Florida’s Move to Import Canadian Drugs! 29:45

8M ago29:45

29:45

On this episode of the PharmaPodcast, we will discuss Florida, and its plans to import Drugs from Canada. Florida is making headlines for its bold move to import prescription drugs from Canada, a strategy aimed at reducing healthcare costs in that state. This shift could potentially transform the landscape of pharmaceutical importation in the US an…

1
Natalie Gochnour explains six transitions happening in Utah and what it means for the state's future 25:27

8M ago25:27

25:27

Natalie Gochnour says the state of Utah is at an inflection point. She calls it the “New Utah.” In this episode of U Rising, Gochnour, the director of the University of Utah’s Kem C. Gardner Policy Institute, explains how Utah is changing and what it means for state leaders, policymakers and all of us. Subscribe to the U Rising podcast on your favo…

1
The Social Isolation of Caring For Someone with a Rare Disorder 36:57

8M ago36:57

36:57

I Care for Rare reveals the challenges faced by the families caring for people who have a rare health condition. In this episode of the I Care for Rare podcast host Sherrilynne Starkie and Sandra Markus, founder of I Care for Rare, welcome Carl Weatherall to the show. As father to Alyssa, a young woman who experiences hundreds of epileptic seizures…

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Winding Path: Sundance film tells how Eastern Shoshone upbringing shaped U medical student’s journey to become a healer 37:26

8M ago37:26

37:26

The Sundance Film Festival is underway in Park City, showcasing some of the year’s best independent films. One is “Winding Path,” a short documentary featuring Jenna Murray, an MD-PhD student at the U. The film tells the story of Jenna's journey to become a healer and how that path has been shaped by her Eastern Shoshone upbringing and the Wind Riv…

1
Foot Pain Insights With Dr. Greg Stilwell 40:11

8M ago40:11

40:11

Finding the right shoes when you have CMT can be a major challenge. The CMTA presents CMT 4 Me, its official community podcast. Join hosts Chris and Liz O. as they share a conversation with podiatrist Dr. Greg Stilwell and his intern Brandin Irwin about how to navigate footwear choices with CMT and innovations that could change the game. When nerve…

1
FinTech is a hot industry. Ryan Christiansen explains what that means for the U – and Utah. 27:26

9M ago27:26

27:26

If you use your smartphone or computer to access bank accounts or pay bills, you already have some understanding of how technology and artificial intelligence have changed the financial industry. Host Chris Nelson talks with Ryan Christiansen, executive director of the U’s Stena Center for Financial Technology, about why Utah is a hub for this risi…

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The patient journey | Von Hippel-Lindau syndrome (VHL) 17:03

9M ago17:03

17:03

Von Hippel-Lindau syndrome (VHL), is an inherited condition that brings about tumors in various organs, particularly hemangioblastomas, which are blood vessel tumors found in the brain, spinal cord, and retina. Listen to FIECON's latest 'Patient Perspectives' podcast with Lauren Weinberg, Senior Associate at FIECON, talking to Frankie Bryant about …

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A Year of Healing: Impact and Insights with Lois Brown from Health Partners International Canada 27:45

9M ago27:45

27:45

On this episode of the Pharma Podcast, my guest is Lois Brown, President of Health Partners International Canada, and on this episode of the Pharma Podcast, we discuss the transformative impact of global health initiatives, the critical role of pharmaceutical partnerships in advancing healthcare worldwide, and the inspiring achievements and future …

1
Ageism: Here is what it is and how to avoid engaging in it 27:33

9M ago27:33

27:33

Age may just be a number, but ageism is real. In this episode of U Rising, host Julie Kiefer talks with Linda Edelman, co-director of the Utah Geriatric Education Consortium and the Hartford Center, about our perceptions of aging, ageism, what it means to be an age-friendly campus and the mindset that helps you age well. Subscribe to the U Rising p…

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CMTA Progress Through Unity With Gilles Bouchard, Laurel Richardson, and Jeana Sweeney 48:38

9M ago48:38

48:38

The CMTA presents CMT 4 Me, its official community podcast. Join hosts Chris and Liz O. as they pull up a chair with three passionate CMTA advocates: Gilles Bouchard, Jeana Sweeney, and Laurel Richardson. In an honest, free-flowing panel conversation, this group shares their wisdom about life with CMT. From the frontiers of science to profoundly pe…

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Focus on student mental health, Ep. 1: A primer 13:37

9M ago13:37

13:37

Focus on Student Mental Health is a five-part series. In episode 1, we start with the basics: What is good mental health and why is it crucial to your success as a college student? Christina Kelly LeCluyse, a clinical social worker with the University Counseling Center, talks about the challenges of anxiety, depression and relationships faced by ma…

1
Focus on Student Mental Healthy, Ep. 2: Anxiety 22:20

9M ago22:20

22:20

Ever wonder if what you’re experiencing is more than just college stress? In episode 2 of this five-part series, Amber Whiteley explores how anxiety differs from common stressors faced by students. Learn how to identify and manage anxiety, turning a common college challenge into an opportunity for growth and resilience. The series, Focus on Student…

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Focus on student mental health, Ep. 3: Depression 24:54

9M ago24:54

24:54

Keri Frantell, a licensed psychologist at University of Utah Counseling Center, provides a comprehensive look at depression in college life in episode 3 of this five-part series. Learn how to recognize the signs and understand the underlying causes of depression among students. Tackle one of the most pressing mental health issues on campus through …

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Focus on student mental health, Ep. 4: Relationships 22:58

9M ago22:58

22:58

In episode 4 of the series, Roberto Martinez talks about navigating the complexities of college relationships. From identifying signs of unhealthy dynamics to building healthy connections, explore how relationships impact student well-being. Martinez, associate director for Clinical Services and a therapist at the University Counseling Center, walk…

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Focus on student mental health, Ep. 5: U of U Mental Health Resources 18:18

9M ago18:18

18:18

Claudia Navarro, director of clinical services at the University Counseling Center, highlights the many resources available to students struggling with mental health in the final episode of this series. Go beyond traditional one-on-one counseling to workshops, support groups and other resources. Demystify the process of seeking help and be proactiv…

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Voice Of Rare Disease Podcasts

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