Best Ultra Rare Disease Podcasts (2025)

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Dr. Allyson Ocean Unfiltered: Science, Colons and Calling BS 43:38

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15h ago43:38

43:38

Allyson with a Y. Ocean with two Ls. And zero chill when it comes to changing the face of cancer care. Dr. Allyson Ocean has been quietly—loudly—at the center of every major cancer breakthrough, nonprofit board, and science-backed gut punch you didn’t know you needed to hear. In this episode, she joins me in-studio for a conversation two decades in…

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[BONUS] No One Told Me: COVID and Cancer 4:48

4d ago4:48

4:48

Sponsored by Invivyd, Inc. Nobody wants to hear about COVID-19 anymore. Especially not cancer patients. But if you’ve got a suppressed immune system thanks to chemo, radiation, stem cell transplants—or any of the other alphabet soup in your chart—then no, it’s not over. It never was. While everyone else is getting sweaty at music festivals, you’re …

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EP 189: From genetic heritability in twins to gut health with Tim Spector of King’s College London and Zoe 47:56

5d ago47:56

47:56

Summary: This week on The Genetics Podcast, Patrick is joined by Tim Spector, Professor of Genetic Epidemiology at King’s College London and co-founder of Zoe. They discuss surprising insights on heritability from decades of twin research, the profound impact of the microbiome on health and disease, and the effect of diet on the gut microbiome. Sho…

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#16-Cancer Care: Surgical Genetic Testing & Pancreatic Cancer Screening 52:10

5d ago52:10

52:10

In this episode we are exploring two publications related to cancer care. In our first segment we talk to 2 authors about their research on genetic counselors and identification of patients for high-risk pancreatic cancer screening. In our second segment, Khalida interviews a genetic counselor about their study to evaluate surgical patient perspect…

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Constellations and Cancer: A Storytelling Rebellion with Lisa Shufro 40:11

8d ago40:11

40:11

EPISODE DESCRIPTION Lisa Shufro is the storyteller’s storyteller. A musician turned innovation strategist, TEDMed curator, and unapologetic truth-teller, Lisa doesn’t just craft narratives—she engineers constellations out of chaos. We go way back to the early TEDMed days, where she taught doctors, scientists, and technocrats how not to bore an audi…

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EP 188: Cracking the code of autism through genetics with Daniel Geschwind of UCLA 59:54

12d ago59:54

59:54

Summary: This week on The Genetics Podcast, Patrick is joined by Daniel Geschwind, Professor, Senior Associate Dean, and Associate Vice Chancellor of Precision Health at UCLA. They discuss the circuitous career path that led Daniel to building a biobank that provided the foundation for autism genetics, the complexity of the molecular and genetic as…

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Dancing Through the Wreckage: Sally Wolf 39:59

15d ago39:59

39:59

What happens when you blend the soul of Mr. Rogers, the boldness of RuPaul, and just a pinch of Carrie Bradshaw? You get Sally Wolf. She’s a Harvard and Stanford powerhouse who ditched corporate media to help people actually flourish at work and in life—because cancer kicked her ass and she kicked it back, with a pole dance routine on Netflix for g…

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EP 187: Rethinking germline gene editing and revolutionizing women’s fertility with Helen O’Neill 38:38

19d ago38:38

38:38

Summary: This week on The Genetics Podcast, Patrick is joined by Helen O’Neill, molecular geneticist, founder of Hertility Health, and associate professor at University College London (UCL). They discuss how Helen’s experience as an identical twin sparked her interest in genetics, her firsthand account of the CRISPR baby controversy, and why stubbo…

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OCRA, Acronyms, and Audra: The Nonprofit Multiverse of Madness 40:35

22d ago40:35

40:35

Episode Description Audra Moran is the President and CEO of OCRA—Ovarian Cancer Research Alliance—which means she spends her days doing things most of us wouldn’t survive five minutes doing: merging nonprofits, leading national patient support programs, funding lifesaving research, surviving pharma grant hell, and trying to reach every woman in Ame…

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EP 186: Unpacking the science and myths around obesity and health with geneticist and author Giles Yeo 50:15

26d ago50:15

50:15

This week on The Genetics Podcast, Patrick is joined by Giles Yeo, geneticist and author of Gene Eating: The Science of Obesity and the Truth About Dieting and Why Calories Don't Count: How We Got the Science of Weight Loss Wrong. Giles and Patrick discuss the genetic, neural, and evolutionary drivers of obesity, the advancements in safe and effect…

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CancerCare Turns 81. Christine Verini Has the Keys 44:19

29d ago44:19

44:19

Christine Verini is a pharmacist by training, a nonprofit CEO by title, and an unapologetic empath by design. She now leads CancerCare, one of the oldest, least-known, and most impactful organizations in the country that actually helps real cancer patients deal with the practical garbage no one likes to talk about—like paying rent, affording a ride…

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EP 185: From newborn screening to lifelong data in an evolving genomics landscape with Madhuri Hegde of Revvity 40:44

1M ago40:44

40:44

This week on The Genetics Podcast, Patrick is joined by Madhuri Hegde, SVP and Chief Scientific Officer of Revvity. They discuss Revvity’s advances in ultra-rapid clinical-grade sequencing, opportunities, challenges, and global inequities in newborn screening, and the dilemma of resequencing versus long-term data storage. Show Notes: 0:00 Intro to …

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Jen Finkelstein: Wigs, Wegmans, and War Stories 46:44

1M ago46:44

46:44

Jennifer Finkelstein is not here for your pity, your pinkwashed slogans, or your performative awareness campaigns. She’s a 20-year young adult breast cancer survivor who turned trauma into a blueprint for action and built 5 Under 40, a no-BS nonprofit supporting women diagnosed with breast cancer under 40. In this episode, we go full Gen X therapy …

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EP 184: Rethinking speed and scale in clinical genomics with Euan Ashley of Stanford University 42:56

1M ago42:56

42:56

This week on The Genetics Podcast, Patrick is joined by Dr. Euan Ashley, Chair of the Department of Medicine at Stanford, founder of various biotech companies, and author of The Genome Odyssey: Medical Mysteries and the Incredible Quest to Solve Them. They discuss Euan’s groundbreaking work on ultra-rapid genome sequencing and how widespread sequen…

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#15-DNA Day: Unexpected DTC Results & Gender Diverse Care 54:45

1M ago54:45

54:45

In this episode we feature 2 articles that explore hot topics in genetics as well as opportunities to improve patient care in honor of DNA Day on April 25. DNA day commemorates the completion of the Human Genome Project and the discovery of DNA’s double helix. Both of these studies utilize qualitative methodologies to highlight people’s experiences…

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Kill Bill Meets Jane Fonda: Ilaria Montagnani 38:08

1M ago38:08

38:08

What happens when a black belt, sword-slinging fitness icon gets cancer—twice? She picks up a camera and dares the universe to test her again. Ilaria Montagnani is not your average anything. She’s been building strong bodies (and stronger minds) for over 30 years as the founder of Powerstrike. She’s part Jane Fonda, part Uma Thurman, and very much …

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EP 183: Rewriting the Rules for Ultra-Rare Diseases with Kent Rogers of EveryONE Medicines 40:07

2M ago40:07

40:07

This week on The Genetics Podcast, Patrick is joined by Kent Rogers, Chief Executive Officer at EveryONE Medicines. They discuss Kent’s journey across every side of the desk in the drug discovery space, EveryONE Medicines’ efforts to develop antisense oligonucleotides for ultra-rare diseases, and the need to adapt regulatory models for n-of-1 thera…

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Patient No More, Bullsh*t No More: Helene M Epstein 40:01

2M ago40:01

40:01

Helene M. Epstein is not here to make friends with the healthcare system. She's here to dismantle the bullshit, one catastrophic medical error at a time. An ad agency veteran turned patient safety firebrand, Helene’s journey from business development to writer to “badass queen of patient safety,” is one hell of a ride. We talk about how her son was…

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EP 182: Demystifying genetic counseling with Matt Burgess 48:28

2M ago48:28

48:28

This week on The Genetics Podcast, Patrick is joined by Matt Burgess, genetic counselor, host of the Demystifying Genetics podcast, and Adjunct Professor at Bay Path University. They discuss the evolution of genetic counseling, ethical challenges in gene therapy, and Matt’s experiences with his podcast. Show Notes: 0:00 Intro to The Genetics Podcas…

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Be Like Zach: Love, Loss, and Legacy 44:06

2M ago44:06

44:06

Jonathan and Jennifer Wall didn’t choose this path, but they’re walking it with purpose. After losing their son, Zach, they turned their grief into action, founding Zach’s Bridge, a lifeline for families navigating pediatric cancer. This episode isn’t about platitudes or silver linings—it’s about the raw, unfiltered reality of love and loss, the re…

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EP 181: Transforming frustration into breakthroughs in gene therapy with Salvador Rico of Encoded Therapeutics 45:30

2M ago45:30

45:30

This week on The Genetics Podcast, Patrick is joined by Salvador Rico, Chief Medical Officer at Encoded Therapeutics. They discuss Salvador’s journey into drug development, his work on gene therapy for X-linked myotubular myopathy, and fundamental challenges and exciting advances in the genetics field. Show Notes: 0:00 Intro to The Genetics Podcast…

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Love Is Rare. Life Is Strange: My Best Friend Sarah 50:31

2M ago50:31

50:31

Sarah Armstrong—forever Sarah Oakden to me, no matter what the legal documents say—isn't just my best friend. She's my first college friend, my musical theater soulmate, and the first person who truly saw me as an artist. She was there when I walked onto Binghamton’s campus, and she was there when I walked into cancer hell. And, because we’re nothi…

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EP 180: From a consulting project to a biotech start-up with Leeland Ekstrom of Nashville Bio 41:24

2M ago41:24

41:24

This week on The Genetics Podcast, Patrick is joined by Leeland Ekstrom, CEO and co-founder of Nashville Bio. They discuss how Leeland went from being a consultant on a project for Vanderbilt University to a co-founder of a start-up and the unique aspects of NashBio’s clinical and genetic database. Show Notes: 0:00 Intro to The Genetics Podcast 00:…

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#14- Cardio & Genetics: Exploring Revenue & Best Practices 56:32

2M ago56:32

56:32

In this episode, we are discussing 2 articles focused on cardiovascular genetics. In the first segment, Khalida talks to authors Marianne and Erin about their research exploring the opportunities for downstream revenue of cardiac genetic counseling services in a pediatric medical center. In the second segment, Naomi chats with Jodie and Erin about …

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Food for Thought: Cancer, Calories, and Kicking Ass 39:22

2M ago39:22

39:22

Food for Thought: Cancer, Calories, and Kicking Ass Vanessa Rissetto is back, and she’s bringing the same energy, wit, and unapologetic realness that made her a fan favorite. Last time, we talked nutrition and the rise of Culina Health. This time, life threw her a plot twist—breast cancer. Because, you know, irony. Vanessa was busy building a nutri…

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EP 179: Redefining rare disease realities with Sharon Terry of the Genetic Alliance 42:08

3M ago42:08

42:08

This week on The Genetics Podcast, Patrick is joined by Sharon Terry, President & CEO of Genetic Alliance. They discuss how Sharon established a layperson-led biobank, her long-term work on rare diseases and patient advocacy, and her program to bring genetic technology to patients in low- to middle-income countries. Show Notes: 0:00 Intro to The Ge…

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HPV, Anal Cancer, and the Fabulous Ms. Lillian Kreppel 39:23

3M ago39:23

39:23

EPISODE DESCRIPTION Lillian Kreppel doesn’t hold back. A seven-year anal cancer survivor and co-founder of the HPV Cancers Alliance, she has made it her mission to challenge stigma, fight misinformation, and push for better awareness of HPV-related cancers. In this episode, she sits down with Matthew Zachary to talk about her journey from high-powe…

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EP 178: Expanding the human proteome to facilitate drug discovery with John Lepore of ProFound Therapeutics 39:37

3M ago39:37

39:37

This week on The Genetics Podcast, Patrick is joined by Dr. John Lepore, physician-scientist and CEO of ProFound Therapeutics. They discuss ProFound Tx’s mission to expand the proteome to identify novel drug targets – which resulted in the ProFoundry atlas – and the ways in which John’s diverse experiences inform his approach as a leader. Show Note…

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IMPOSSICANT! Grace Charrier’s No-Holds-Barred Cancer Rebellion 37:57

3M ago37:57

37:57

Grace Charrier—a powerhouse advocate, author, and cancer survivor—whose journey from a Stage 3 triple-negative breast cancer diagnosis to global advocacy is nothing short of extraordinary. Originally from Nigeria, Grace's life was upended when she was diagnosed following an unexpected health scare. Instead of retreating, she turned her experience i…

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EP 177: The vision of Our Future Health with Raghib Ali 43:16

3M ago43:16

43:16

This week on The Genetics Podcast, Patrick is joined by Raghib Ali, CEO, CMO, and Principal Investigator of Our Future Health UK. As a clinical epidemiologist with a passion for reducing health inequalities, Raghib offers fresh insights into the priorities, challenges, and transformative impact of the groundbreaking genomics initiative, Our Future …

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The Art of Healthcare Fuckery 40:56

3M ago40:56

40:56

Buckle up, because Amy Gittelman is back, and this episode is one for the ages. A fellow SUNY Binghamton (yes, we still call it that) alum, Amy joins me for a hilarious and brutally honest deep dive into the absurdities of healthcare, insurance fuckery, and the general nonsense that plagues the system. From dodging medical debt landmines to battlin…

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EP 176: Hunting rare kidney disease mutations with Anthony Bleyer of Wake Forest and Stan Kmoch of Charles University 38:24

3M ago38:24

38:24

This week on The Genetics Podcast, we’re celebrating Rare Disease Day with a very special episode. Patrick is joined by clinical nephrologist Anthony Bleyer and geneticist Stan Kmoch to discuss how their decade-long international collaboration has uncovered genetic mutations in families with rare inherited kidney diseases – including Patrick’s. Sho…

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#13- Rare Disease Day 2025: Digital Tools for Rare Conditions & Navigating Ultra-rare Disorders 48:04

3M ago48:04

48:04

In this episode we are exploring rare and ultra-rare disease in honor of Rare Disease Day on February 28 which raises awareness for the 300 million people worldwide living with a rare disease. We are talking with one author about their study on the role of digital tools in rare disease management and another author about their research into experie…

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Unf*cking Healthcare with Deb Gordon 42:35

3M ago42:35

42:35

Welcome to another episode of Out of Patients, where we get real about the absolute circus that is the American healthcare system. If you've ever been trapped in a medical billing nightmare, gaslit by insurance reps, or just generally felt like healthcare is an elaborate game designed to screw you—this one’s for you. Joining me is the indomitable D…

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EP 175: Pioneering treatment for stop codon disease using tRNA with Michelle Werner of Alltrna 44:45

3M ago44:45

44:45

This week on The Genetics Podcast, Patrick is joined by Michelle Werner, CEO at Alltrna and CEO/Partner at Flagship Pioneering. They discuss Alltrna’s promising findings from its first preclinical study on using tRNA to rescue stop codon disease, the strategic use of basket trials, and more! Show Notes: 0:00 Intro to The Genetics Podcast 01:00 Welc…

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Cancer, AI, and the Meaning of Life 41:28

4M ago41:28

41:28

You know how some people enter your life with a knock, a bang, or maybe even a LinkedIn request? Not Rebecca Batterman, returning champion to Out of Patients, making her dramatic second appearance, Back in 2019, she karmically appeared like a plot twist in a film noir—unexpected, inevitable, and full of surprises. An AI strategist, an optimist (yes…

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EP 174: Decentralized science and reducing the cost of gene therapies with Jocelynn Pearl of the TAM Center 46:08

4M ago46:08

46:08

On this week’s episode of The Genetics Podcast, we’re joined by Jocelynn Pearl, Director of Cancer Cell Therapy at the TAM Center, host of the Lady Scientist Podcast and Co-Founder of LabDAO. Patrick and Jocelynn discuss her move to Mexico to help accelerate the development of new cancer therapies, harnessing the power and potential of decentralize…

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The Big Talk: Where Legacy Meets Spotlight 43:59

4M ago43:59

43:59

Tricia Brouk isn’t just a storyteller—she’s a story architect, crafting narratives that connect humanity. A former ballet dancer turned award-winning director, choreographer, and transformational speaker coach, Tricia brings her unique journey to the mic in this captivating conversation. From dancing in iconic opera houses to choreographing Hollywo…

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EP 173: Tackling genetic cardiomyopathy from the bed to the bench with Eric Adler of Lexeo Therapeutics and UCSD 41:11

4M ago41:11

41:11

Summary: This week on The Genetics Podcast, Patrick is joined by Eric Adler, Chief Medical Officer and Head of Research at Lexeo Therapeutics and Professor of Medicine at University of California San Diego. Eric shares his experience with genetic cardiomyopathy and his work on gene therapy for Danon disease, drawing from both clinical and research …

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Mad Science: AI, Mental Health, and the Future of Sanity 46:08

4M ago46:08

46:08

Get ready for a wild ride with Matt Lewis, the Tony Stark-meets-Jerry Seinfeld of the mental health AI world. As a multi-degreed polymath, Matt has been ahead of the curve on AI since MySpace was a thing. In this episode, we dive into everything from neuroethics and AI-powered mental health solutions to existential fears of Skynet ruining your day.…

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EP 172: Racial health disparities in genetic testing and breast cancer treatment with Dr. Versha Pleasant of University of Michigan 48:48

4M ago48:48

48:48

This week on The Genetics Podcast, Patrick is joined by Versha Pleasant, Clinical Assistant Professor in the Department of Obstetrics and Gynecology, University of Michigan and Director of the Cancer Genetics and Breast Health Clinic at Von Voigtlander Women’s Hospital. They discuss ongoing disparities in healthcare, in particular why black women i…

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#12-Genetic Testing in the General Population: Communication and Understanding 43:21

4M ago43:21

43:21

On This Episode We Discuss: In this episode we explore genetic testing in low risk populations, both in direct-to-consumer and clinical settings. We interview authors on two recent JoGC papers related to topics of communication of health risks, understanding of genetic testing, and informed decision-making. You can find the Journal of Genetic Couns…

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[BONUS] HannahPod: A Solo Act with Dad 15:44

4M ago15:44

15:44

What happens when you give a 14-year-old the mic and let her fly solo without her twin brother? Magic, that’s what. This episode of Out of Patients features my daughter, Hannah, on her seventh (yes, seventh) appearance on the show, but this time she’s stealing the spotlight solo. From reminiscing about slushy Christmas Eves and rare baby illnesses …

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The Natanya Experience: A Tsunami of Wit, Wisdom, and Whoa 36:53

4M ago36:53

36:53

Prepare for a whirlwind of brilliance with Dr. Natanya Wachtel—a self-proclaimed "failed therapist" turned media maven, behavioral strategist, and all-around badass. In this episode, we dive into her transformative journey from navigating personal loss to spearheading innovative mental health initiatives and reimagining her own identity in a world …

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EP 171: The past, present, and future of long-read sequencing with Jonathon Hill of Wasatch Biolabs 35:13

4M ago35:13

35:13

This week on The Genetics Podcast, Patrick is joined by Jonathon Hill, associate professor at Brigham Young University and co-founder and VP of Wasatch Biolabs. Jonathan and Patrick discuss the power of long-read sequencing, how Wasatch Biolabs was created, and how Jonathon has fostered valuable collaborations between academic labs and Wasatch Biol…

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“Don’t Google It” with Jen Singer 36:16

4M ago36:16

36:16

Back for Round 2 and wielding her wit like a machete, Jen Singer returns to Out of Patients with Matthew Zachary. Cancer survivor, heart failure "graduate," and creator of the 'Just Diagnosed Guides,' Jen has seen it all — and she's here to help YOU see it all more clearly. From dismantling medical jargon to calling BS on "Stay Strong" toxic positi…

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EP 170: Pan-European collaboration and dementia research with Angela Bradshaw, from Alzheimer Europe 42:25

5M ago42:25

42:25

This week on The Genetics Podcast, Patrick is joined by Angela Bradshaw, Director for Research at Alzheimer Europe and honorary lecturer at the University of Glasgow. Patrick and Angela discuss how Alzheimer Europe partners in and support pan-European dementia research, the enormous heterogeneity of dementia and Alzheimer’s disease, the future of p…

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No Time for Why: Sean Wachter Returns 37:39

5M ago37:39

37:39

Prepare to be inspired and entertained as Sean Wachter returns to Out of Patients! Sean, aka "The Cancer Fighter," is a two-time melanoma survivor, professional wrestler, coffee shop entrepreneur, and self-proclaimed 'f**ked up Forrest Gump.' With a resume that includes Madison Square Garden, WWE dreams, and a 'We Got This' People's Champion belt, …

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EP 169: Common variants in rare neurological diseases with Hilary Martin of the Wellcome Sanger Institute 45:39

5M ago45:39

45:39

This week on The Genetics Podcast, we’re joined by Hilary Martin, Group Leader in Human Genetics at the world-renowned Wellcome Sanger Institute. Hilary and Patrick discuss her group’s work on neurodevelopmental conditions, the role of common genetic variants in rare disease, and how to untangle the impact of direct and indirect genetic influences …

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Mariana Arnaut: The After Cancer 37:05

5M ago37:05

37:05

In this lively and insightful episode of Out of Patients, host Matthew Zachary sits down with Mariana Arnaut, Founder and CEO of The After Cancer, a groundbreaking platform helping cancer survivors navigate the uncharted waters of life post-treatment. Joined by his sharp and witty Chief of Staff, Jen Ramprasad, the trio dives into the gaps in survi…