Podcasts about rare diseases

Dr. Rachel Gatlin entered neuroscience with curiosity and optimism. Then came chaos. She started her PhD at the University of Utah in March 2020—right as the world shut down. Her lab barely existed. Her advisor was on leave. Her project focused on isolation stress in mice, and then every human on earth became her control group. Rachel fought through supply shortages, grant freezes, and the brutal postdoc job market that treats scientists like disposable parts. When her first offer vanished under a hiring freeze, she doubled down, rewrote her plan, and won her own NIH training grant. Her story is about survival in the most literal sense—how to keep your brain intact when the system built to train you keeps collapsing.RELATED LINKS• Dr. Rachel Gatlin on LinkedIn• Dr. Gatlin's Paper Preprint• Dr. Eric Nestler on Wikipedia• News Coverage: Class of 2025 – PhD Students Redefine PrioritiesFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Neil Kumar is founder and CEO of Palo Alto, Calif.-based BridgeBio Pharma, a rare disease drug developer.

“My most powerful content is when I lead with my voice as a mom because I have the same concerns about keeping my kids safe as my audience does. It's a powerful and effective way to find common ground with people,” says Dr. Jess Steier, a popular public health scientist and science communicator seeking to bridge divides and foster trust through empathetic, evidence-based communication. Dr. Steier has several platforms from which to do this work, including  Unbiased Science --  a communication hub that uses multiple social media platforms and other communications channels to share validated health and science information -- and as executive director of the Science Literacy Lab, a nonprofit organization dedicated to reaching a diverse audience seeking clarity and reliable information on scientific topics. “The science is less than half the battle,” she explains. “It's about how to communicate with empathy.”Join Raise the Line host Lindsey Smith for a valuable conversation that explores:What sources Dr. Steier relies on to validate informationHow she uses “escape room” exercises to train clinicians on empathetic communicationWhy tailored, story-driven messages reach audiences more effectively than facts.Mentioned in this episode:Unbiased Science If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

When Nikki McIntosh's son Miles was less than a year old, he was diagnosed with a form of the rare neuromuscular condition spinal muscular atrophy. Since then, she has needed to learn how to manage the complexities of her own life while managing Miles' care, coordinating his providers; and navigating the medical, financial, and emotional aspects of raising a child with a rare disease. McIntosh has shares her experience in a book intended to help others new to the journey of caring for a child with a rare disease. We spoke to McIntosh, author of “Rare Mamas: Empowering Strategies for Navigating Your Child's Rare Disease,” about her book, the medical, emotional, and logistical challenges faced by rare disease families; and the importance of making time for self-care.

EPISODE DESCRIPTIONBefore she was raising millions to preserve fertility for cancer patients, Tracy Weiss was filming reenactments in her apartment for the Maury Povich Show using her grandmother's china. Her origin story includes Jerry Springer, cervical cancer, and a full-body allergic reaction to bullshit. Now, she's Executive Director of The Chick Mission, where she weaponizes sarcasm, spreadsheets, and the rage of every woman who's ever been told “you're fine” while actively bleeding out in a one-stall office bathroom.We get into all of it. The diagnosis. The misdiagnosis. The second opinion that saved her life. Why fertility preservation is still a luxury item. Why half of oncologists still don't mention it. And what it takes to turn permission to be pissed into a platform that actually pays for women's futures.This episode is blunt, hilarious, and very Jewish. There's chopped liver, Carrie Bradshaw slander, and more than one “fuck you” to the status quo. You've been warned.RELATED LINKSThe Chick MissionTracy Weiss on LinkedInFertility Preservation Interview (Dr. Aimee Podcast)Tracy's Story in Authority MagazineNBC DFW FeatureStork'd Podcast EpisodeNuDetroit ProfileChick Mission 2024 Gala RecapFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship, email podcast@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

“I realized that rather than talking one-to-one with patients in the exam room, you could talk one-to-many on social media,” says Dr. Kevin Pho, explaining the origins of KevinMD, the highly influential information sharing site he created for physicians, medical students and patients twenty years ago. Since then, KevinMD has become a valuable space for clinicians and patients to share stories and perspectives on topics from burnout and moral injury to technology and trust. In this conversation with Raise the Line host Michael Carrese, Dr. Pho reflects on the dual paths that have defined his career: as a practicing internal medicine physician and as one of healthcare's most trusted online voices. And despite the challenges of doing so, Dr. Pho encourages other medical providers to follow his lead. “Patients are going online, and if physicians are not there, they're going to get information that's perhaps politically-driven or simply inaccurate.”This thoughtful conversation also explores: How social media has reshaped health communicationThe risks and rewards for clinicians of having an online presence Why medical schools should teach negotiating skillsMentioned in this episode:KevinMDEstablishing, Managing and Protecting Your Online Reputation If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

This inspiring episode focuses on women leading innovation in medicine, as Dr. Hilary Longhurst and Mrinal Shah break down the revolutionary intersection of patient advocacy, clinical courage, and gene-editing technology for rare diseases like Hereditary Angioedema (HAE). Dr. Longhurst shares the moment she felt her voice and vision were challenged as a woman and the critical lesson that her greatest failures were "sins of omission," inspiring her to be brave and always represent the patient. Mrinal Shah discusses the importance of protecting curiosity and creativity in large systems, offering powerful advice to the next generation of women scientists: embrace change and have faith in yourself. The conversation highlights the essential role of women leaders in stepping outside conventional guidelines, forging courageous collaborations, and driving the responsible innovation that makes the impossible happen for patients globally. This podcast is not available for CME/CE/CPD credits. Please visit the Medscape homepage for accredited CME/CE/CPD activities.

Cody Hodgson and The RYR-1 Foundation 11/11/25Diagnosed in 2016 with RYR-1-related malignant hyperthermia, Cody Hodgson's promising NHL playing career was cut short when the effects of his disease made it impossible for him to push his body to the extent necessary in pro hockey. However, what initially looked like a major setback gave way to a very different, equally powerful calling. Now an active ambassador for the Pittsburgh, PA-based RYR-1 Foundation, Hodgson is precisely the kind of figure in the hockey world that our production staff loves connecting with.With mobile recording gear in tow, our producer and co-host, Jeff Taylor recently joined the RYR-1 Foundation in Pittsburgh for their 10th anniversary conference. A handful of in-depth interviews were conducted that day, including with former NHL'er Cody Hodgson himself, as well as Toronto-based anesthesiologist Dr. Sheila Riazi, Hodgson's diagnosing physician. Reading: The RYR-1 Foundation's Clinical Care Guidelines text:https://ryr1.org/clinical-care-guidelinesVideo: Watch Cody Hodgson score an incredible shorthanded goal, beating all five Carolina Hurricanes players:https://www.youtube.com/watch?v=1pyGSyfkO6IVideo: Wim Hof Breathing Method (YouTube):https://www.youtube.com/watch?v=tybOi4hjZFQToday's episode was co-produced by Jeff Taylor and Ashley Taylor.Very special thanks to Espresso A Mano, Pittsburgh's finest coffee roasters and cafe, for partnering with Fly Penguins Fly podcast. Visit an Espresso A Mano location near you:https://espressoamano.com/Thank you for listening!! Follow the podcast on X/Twitter: @penspodJeff Taylor: @penspod_JT // Jordan DeFigio: @fidgenewtonLETS GO PENS.JEFF TAYLOR + JORDAN DEFIGIOFly Penguins Fly Podcast is produced by Jeff TaylorOriginal theme and outro music composed and recorded by Jeff TaylorMark Guiliana played drums, Ashley Taylor sang.Interested in becoming a sponsor of the podcast?Email the Fly Penguins Fly Podcast at: penspod@gmail.comShane Taylor designed and delivered our artwork.Hire Shane: shanetaylordesigns@gmail.comThis episode includes portions of the following musical selections:Fly Penguins Fly Theme composed and produced by Jeff TaylorKid Kodi by Blue Dot SessionsHammers and Tape composed and produced by Jeff TaylorArp Landing composed and produced by Jeff TaylorInside the Paper Crane by Blue Dot SessionsHardboil by Blue Dot SessionsCamphor Kingdom by Blue Dot SessionsDiatom by Blue Dot Sessions

EPISODE DESCRIPTION:Libby Amber Shayo didn't just survive the pandemic—she branded it. Armed with a bun, a New York accent, and enough generational trauma to sell out a two-drink-minimum crowd, she turned her Jewish mom impressions into the viral sensation known as Sheryl Cohen. What started as one-off TikToks became a career in full technicolor: stand-up, sketch, podcasting, and Jewish community building.We covered everything. Jew camp lore. COVID courtship. Hannah Montana. Holocaust comedy. Dating app postmortems. And the raw, relentless grief that comes with being Jewish online in 2025. Libby's alter ego lets her say the quiet parts out loud, but the real Libby? She's got receipts, range, and a righteous sense of purpose.If you're burnt out on algorithm-friendly “influencers,” meet a creator who actually stands for something. She doesn't flinch. She doesn't filter. And she damn well earned her platform.This is the most Jewish episode I've ever recorded. And yes, there will be guilt.RELATED LINKSLibby's Website: https://libbyambershayo.comInstagram: https://www.instagram.com/libbyambershayoTikTok: https://www.tiktok.com/@libbyambershayoLinkedIn: https://www.linkedin.com/in/libby-walkerSchmuckboys Podcast: https://jewishjournal.com/podcasts/schmuckboysForbes Feature: Modern Mrs. Maisel Vibes https://www.forbes.com/sites/joshweissMedium Profile: https://medium.com/@libbyambershayoFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform.For guest suggestions or sponsorship, email podcast@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In this episode, Steven Ringel, CEO of the Kazuna Foundation and Nome Therapeutics, joins the podcast to discuss how his team is using artificial intelligence to make personalized medicine accessible for rare disease patients. He shares emerging trends in AI and healthcare, the growing potential of individualized therapies, and his advice for passionate leaders driving innovation in the field.

“We've created this ecosystem where the vast majority of information on social media, particularly in nutrition science, is inaccurate or misleading,” says Dr. Jessica Knurick, a registered dietitian and Ph.D. in nutrition science specializing in chronic disease prevention. As you'll learn on this episode of Raise the Line with host Lindsey Smith, countering that trend has become Dr. Knurick's focus in the past several years, and her talent for translating complex scientific information into practical guidance has attracted a large following on social media. Beyond equipping her audience with the tools to think critically and make informed choices for themselves, she also wants them to make the connection between the generally poor health status of most Americans with public policies on food and health and advocate for more beneficial approaches. “We can create systems that put the most people in the position to succeed versus putting the most people in the position to fail.” Tune in to learn from this trusted voice on nutrition, food policy, and public health as she shares her perspectives on: Strategies for risk reduction and behavior changeWhat can rebuild trust in medical information How you can cut through the noise and spot misinformation onlineMentioned in this episode:Dr. Knurick's WebsiteTikTok ChannelInstagram FeedFacebook Page If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

This episode we had a conversation with Khartik Uppalapati about the role of AI in the health sector and rare diseases

In this episode, Steven Ringel, CEO of the Kazuna Foundation and Nome Therapeutics, joins the podcast to discuss how his team is using artificial intelligence to make personalized medicine accessible for rare disease patients. 

In this episode, Steven Ringel, CEO of the Kazuna Foundation and Nome Therapeutics, joins the podcast to discuss how his team is using artificial intelligence to make personalized medicine accessible for rare disease patients. 

When the system kills a $2.4 million study on Black maternal health with one Friday afternoon email, the message is loud and clear: stop asking questions that make power uncomfortable. Dr. Jaime Slaughter-Acey, an epidemiologist at UNC, built a groundbreaking project called LIFE-2 to uncover how racism and stress shape the biology of pregnancy. It was science rooted in community, humanity, and truth. Then NIH pulled the plug, calling her work “DEI.” Jaime didn't quit. She fought back, turning her grief into art and her outrage into action. This episode is about the cost of integrity, the politics of science, and what happens when researchers refuse to stay silent.RELATED LINKS• The Guardian article• NIH Grant• Jaime's LinkedIn Post• Jaime's Website• Faculty PageFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship email podcasts@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Could studying the DNA of extinct animals – or even bringing them back to life – help us save today's endangered species and inform modern medicine?  That may sound like the premise for a Hollywood movie, but it's work that our Raise the Line guest, Dr. Beth Shapiro, is actually engaged in as Chief Science Officer at Colossal Biosciences, which describes itself as the world's first and only de-extinction company.  “It's not just about learning about the past. It's learning about the past so we have more validated scientific information that we can use to predict what we can do to better influence the future,” she tells host Michael Carrese. An internationally-renowned evolutionary molecular biologist and paleogeneticist, Dr. Shapiro is a pioneer in ancient DNA research and has successfully sequenced genomes, like that of the dodo, to study evolution and the impact on humans. At Colossal Biosciences, she leads teams working to bring back traits of extinct species such as the mammoth, not for spectacle, but to restore ecological balance. “When species become extinct, you lose really fundamental interactions between species that existed in that ecosystem. By taking a species that's alive today and editing its DNA so that it resembles those extinct species, we can functionally replace those missing ecological interactions.” Tune into this utterly fascinating conversation to hear about what Jurassic Park got wrong, the positive ecological impact of reintroducing giant tortoises to Mauritius, and the ethics of using gene editing and other biotechnologies. Mentioned in this episode:Colossal Biosciences If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

EPISODE DESCRIPTIONAllison Applebaum was supposed to become a concert pianist. She chose ballet instead. Then 9/11 hit, and she ran straight into a psych ward—on purpose. What followed was one of the most quietly revolutionary acts in modern medicine: founding the country's first mental health clinic for caregivers. Because the system had decided that if you love someone dying, you don't get care. You get to wait in the hallway.She's a clinical psychologist. A former dancer. A daughter who sat next to her dad—legendary arranger of Stand By Me—through every ER visit, hallway wait, and impossible choice. Now she's training hospitals across the country to finally treat caregivers like patients. With names. With needs. With billing codes.We talked about music, grief, psycho-oncology, the real cost of invisible labor, and why no one gives a shit about the person driving you to chemo. This one's for the ones in the waiting room.RELATED LINKSAllisonApplebaum.comStand By Me – The BookLinkedInInstagramThe Elbaum Family Center for Caregiving at Mount SinaiFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship, email podcast@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

According to the Bloomberg School of Public Health at Johns Hopkins University, women make up 70% of the global healthcare workforce but hold only about 25% of leadership positions. Our guest today on Raise the Line, Dr. Roopa Dhatt, has been a leading voice in the movement to correct that imbalance through co-founding an organization called Women in Global Health (WGH), which has established chapters in over 60 countries since it started a decade ago. Dr. Dhatt is also pursuing that agenda and addressing other pressing issues in healthcare as a Young Global Leader at the World Economic Forum. “We're changing the equation so women delivering health are also viewed and valued as leaders,” says the internal medicine physician and assistant professor at Georgetown University School of Medicine. Beyond leadership equity, Dr. Dhatt is also seeking to address systemic pay inequities and high levels of violence and harassment experienced by women in the health sector, issues that were highlighted in research conducted by WGH. Although WGH has seen high-level success influencing policy at the World Health Organization and United Nations, Dr. Dhatt says the heart of its success is local. “Women community health workers have begun to see themselves as leaders and the heroines of health in their communities. That's profound change.” Join host Michael Carrese for a probing conversation that identifies the structural barriers blocking advancement for women and that explains why the health of communities and the planet depend on inclusive leadership.Mentioned in this episode:Women in Global HealthWHO Report: Delivered By Women, Led By MenDr. Roopa Dhatt on LinkedIn If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

The Triple Threat to the Rare Disease Ecosystem — A Conversation with Dr. Wendy ChungSometimes you come across someone whose work changes the way you think about an entire field. That's exactly what happened when I read about Dr. Wendy Chung in Rare Revolution Magazine.Dr. Chung is one of those rare people who stands at the intersection of science, medicine, ethics, and humanity. She's a clinical and molecular geneticist, the Chief of Pediatrics at Boston Children's Hospital, and the Mary Ellen Avery Professor at Harvard Medical School. She leads NIH-funded research into the genetics of conditions like pulmonary hypertension, autism, birth defects, and a wide range of rare diseases. She's advanced newborn screening for life-threatening disorders like spinal muscular atrophy and Duchenne muscular dystrophy — work that means the difference between life and death for many families. She's been recognized with the Rare Impact Award from NORD, is a member of the National Academy of Medicine, and is a leading voice on the ethics of genomics.But titles and accolades only tell part of her story. What stands out most is her deep commitment to the people behind the science, the families living day in and day out with conditions that most of the world has never heard of.When we spoke, Dr. Chung described what she calls the “triple threat” to the rare disease ecosystem:Misinformation in health that spreads faster than facts and erodes trust in science.Lack of access to healthcare, leaving too many without the treatments they need, when they need them.Insufficient investment in research, slowing the pace of discovery and delaying life-saving therapies.Each of these challenges is daunting on its own, but together they create a fragile and often hostile environment for progress in rare disease research and care.She pointed out that while most genetic conditions are rare individually, collectively they are surprisingly common — affecting millions worldwide. That's a staggering thought, especially considering how little public awareness and funding rare diseases often receive.We also talked about autism, a condition she has studied extensively. She emphasized that autism is a spectrum, with multiple causes, the majority of which are genetic. Understanding that complexity is crucial, not only for advancing science but also for helping families cope and make informed decisions.One of the threads running through our conversation was the urgent need for better communication in science. In an age where misinformation spreads in seconds, the ability to convey facts clearly and accessibly isn't just a nice skill — it's a necessity. Miscommunication or confusion doesn't just impact public opinion; it influences policy decisions, research funding, and the direction of healthcare itself.Dr. Chung stressed that advocacy matters at every level — from the conversations parents have with their children's doctors to the policies shaped in Washington. Community engagement isn't just a feel-good idea; it's one of the most effective ways to accelerate progress. Patients, families, scientists, and policymakers all have a role to play, and collaboration among them is where breakthroughs happen.In the end, our conversation left me with two truths. First, that rare disease progress depends on persistence from so many people. The researchers who refuse to give up, from families who continue to fight for answers, and from advocates who push for change. Second, that truth itself is a kind of medicine. The more accurately, compassionately, and consistently we can communicate about rare diseases, the better chance we have at building a healthcare ecosystem that works for everyone.Dr. Wendy Chung is leading that charge, not just in the lab, but in the public square. And in this fight, both matter equally. Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

“It looks like I’m going to die.”- Ryan Becker is the only known person to have all three subtypes of a rare disease called Pyoderma Gangrenosum. Ryan joins Steve Dale to discuss how insurance regulations are stopping him from getting the one drug that he needs. Ryan talks about his journey through medical trials, the […]

“They say it takes a village to raise a child. I really think it takes a village to treat a patient,” says Dr. Lanae Mullane, a naturopathic doctor and clinical strategist who has spent years at the forefront of bridging functional medicine, nutraceutical development, and digital health. In this episode of Raise the Line, host Lindsey Smith explores Dr. Mullane's view that naturopathic medicine complements conventional care by expanding -- not replacing -- the clinical toolkit, and that collaboration should be the future of medicine. “At the end of the day, collaboration and connection create the best outcomes for the people we serve,” she says. Their in-depth conversation also spans the shifting landscape of women's hormone health, including the perimenopausal transition and long-overdue calls for research equity. “We're not just smaller versions of men. We need to have dedicated research for us.” Tune in to learn about the importance of grounding health in sustainable habits, rethinking midlife care for women, and how to help patients take ownership of their health.Mentioned in this episode:Joi + BlokesSuppCoDr. Mullane's Clinical Website If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

EPISODE DESCRIPTIONRebecca V. Nellis never meant to run a nonprofit. She just never left. Twenty years later, she's still helming Cancer and Careers after a Craigslist maternity-leave temp job turned into a lifelong mission.In this 60-minute doubleheader, we cover everything from theater nerdom and improv rules for surviving bureaucracy, to hanging up on Jon Bon Jovi, to navigating cancer while working—or working while surviving cancer. Same thing.Rebecca's path is part Second City, part Prague hostel, part Upper East Side grant writer, and somehow all of that makes perfect sense. She breaks down how theater kids become nonprofit lifers, how “sample sale feminism” helped shape a cancer rights org, and how you know when the work is finally worth staying for.Also: Cleavon Little. Tap Dance Kid. 42 countries. And one extremely awkward moment involving a room full of women's handbags and one very confused Matthew.If you've ever had to hide your diagnosis to keep a job—or wanted to burn the whole HR system down—this one's for you.RELATED LINKSCancer and CareersRebecca Nellis on LinkedIn2024 Cancer and Careers Research ReportWorking with Cancer Pledge (Publicis)CEW FoundationI'm Not Rappaport – Broadway InfoFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship opportunities, email podcast@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

“It's kind of a miracle, frankly,” says Dr. John Buse, a distinguished professor at the University of North Carolina School of Medicine, referring to the effectiveness of GLP-1 receptor agonist medications such as Ozempic in treating type 2 diabetes, promoting significant weight loss, and reducing cardiovascular risk. As a physician scientist for the last three decades at UNC, Dr. Buse has played a key role in ushering in this new era of diabetes care, leading or participating in over 200 clinical studies on this class of drugs and others. “Nothing has impacted diabetes care like the GLP-1 receptor agonists. I have lots of patients whose diabetes was never well controlled who have seen all their metabolic problems essentially resolved.”  In this fascinating conversation with Raise the Line host Lindsey Smith, Dr. Buse not only explains how these drugs work, but also provides a clear-eyed look at side effects, and addresses issues of cost and access. Join us for the remarkable story – including the role played by Gila monsters -- behind one of the biggest developments in medicine over the past several years from a world renowned diabetes researcher and clinician. Mentioned in this episode:UNC School of Medicine If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

In this episode, we speak with Associate Professor Leszek Lisowski, Head of the Translational Vectorology Unit at the Children's Medical Research Institute (CMRI), about the cutting-edge world of gene therapy. He explains how viral vectors are engineered to deliver life-saving treatments for rare genetic diseases - many of which are so uncommon, they're only known by the name of the affected gene. Despite being often overlooked, genetic diseases impact 10% of adults and 30% of children in hospitals. Leszek sheds light on the challenges of diagnosis, the promise of emerging genetic testing, and how his work is paving the way for more accurate, effective therapies. Linkedin: Children's Medical Research Institute, Leszek Lisowski Facebook: @jeansforgenes Instagram: @jeansforgenesau

“It wasn't a profession, it was a way of life,” observes internationally respected psychiatrist Dr. Nasser Loza, reflecting on a century-long family legacy in mental health care that began when his grandfather founded The Behman Hospital in Cairo. In this candid Raise the Line conversation with host Michael Carrese, Dr. Loza traces the transformation of psychiatry he's witnessed in his long career as increases in classifications, payment bureaucracy, reliance on pharmaceuticals, and technological disruption have each left their mark. The cumulative costs associated with these changes have, he laments, pushed care out of reach for many and hindered the human connection that is key to the discipline. He describes his prescription for countering these trends as a focus on effective and modest aims. “Rather than saying, come and see me in therapy for five years and I will make a better person out of you, I think focusing on symptom-targeted help is going to be what is needed.”  In this wide-ranging interview, you'll also learn about progress on advancing the rights of mental health patients and lowering stigmas, how to manage the rise of online therapy and use of AI chatbots, and the importance of empathy and transparency in mental health counseling. Don't miss this valuable perspective on a critically important dimension of healthcare that's informed by decades of experience as a clinician, government official and global advocate. Mentioned in this episode:The Behman HospitalMaadi Psychology Center If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

Kerry Mello-Parker, Director of Rare Diseases and REMS programs at Shields Health Solutions, addresses the complexities and challenges faced by patients with rare diseases including diagnostic delays and limited access to medication. Using an integrated specialty pharmacy model, Shields works with pharmacists to have direct access to the EHR, enabling better patient monitoring, shorter time to initiate medication, tracking outcomes, and providing patients with a direct line of communication to their care team. Pharmacists treating rare diseases are also supported with specialized information on medication administration, side effects and complex billing.  Kerry explains, "Shields Health Solutions is a specialty pharmacy accelerator. We partner with over 80 health systems across the United States. We support them in establishing and growing a specialty pharmacy. We help them to access critical medications. Some of them are not available at traditional pharmacies, and we support them in managing clinical quality care programs for their patients." "I'd like to step back a little and talk about what a rare disease is and how we define it. Currently, it is defined as a condition that affects fewer than 200,000 people. However, over 7,000 rare diseases exist. So when we do the math, we come to see that they are not so rare. And some estimates show that up to 10% of the US population may actually have a rare disease. And what I've seen is that there are really three main complexities of treating rare diseases and challenges that patients may face. One of them is that there is a lack of available treatment options when compared with more common diseases. So, for example, only about 10% of rare diseases have an FDA-approved treatment option, but that is changing. We have the Orphan Drug Act, which has actually changed the landscape. It has incentivized and facilitated the development of medications to treat rare diseases." #ShieldsHealthSolutions #IntegratedCareModel #SpecialtyPharmacy #RareDiseases #MedicationAdherence shieldshealthsolutions.com Listen to the podcast here

Kerry Mello-Parker, Director of Rare Diseases and REMS programs at Shields Health Solutions, addresses the complexities and challenges faced by patients with rare diseases including diagnostic delays and limited access to medication. Using an integrated specialty pharmacy model, Shields works with pharmacists to have direct access to the EHR, enabling better patient monitoring, shorter time to initiate medication, tracking outcomes, and providing patients with a direct line of communication to their care team. Pharmacists treating rare diseases are also supported with specialized information on medication administration, side effects and complex billing.  Kerry explains, "Shields Health Solutions is a specialty pharmacy accelerator. We partner with over 80 health systems across the United States. We support them in establishing and growing a specialty pharmacy. We help them to access critical medications. Some of them are not available at traditional pharmacies, and we support them in managing clinical quality care programs for their patients." "I'd like to step back a little and talk about what a rare disease is and how we define it. Currently, it is defined as a condition that affects fewer than 200,000 people. However, over 7,000 rare diseases exist. So when we do the math, we come to see that they are not so rare. And some estimates show that up to 10% of the US population may actually have a rare disease. And what I've seen is that there are really three main complexities of treating rare diseases and challenges that patients may face. One of them is that there is a lack of available treatment options when compared with more common diseases. So, for example, only about 10% of rare diseases have an FDA-approved treatment option, but that is changing. We have the Orphan Drug Act, which has actually changed the landscape. It has incentivized and facilitated the development of medications to treat rare diseases." #ShieldsHealthSolutions #IntegratedCareModel #SpecialtyPharmacy #RareDiseases #MedicationAdherence shieldshealthsolutions.com Download the transcript here

The blood-brain barrier (BBB), formed by brain endothelial cells, pericytes, and astrocytes, is organized into a neurovascular unit that regulates the exchange of proteins between blood circulation and brain parenchyma. Human stem-cell-based models using brain endothelial cells are a powerful tool to investigate how disease-related conditions might affect the blood-brain barrier integrity. However, the cell type composition is critical to faithfully model transcytosis across the blood-brain barrier. Our guests today developed a blood-brain model using induced pluripotent stem cells (iPSCs)-derived endothelial cells with brain-specific identity. Using this model they were able to investigate how disease risk factors affect intracellular transport and reveal a new role for ApoE4 in the regulation of iron metabolism at the blood-brain barrier. GuestsRoberto Villaseñor, Principal Scientist and Laboratory Head of the Brain Delivery, Neuroscience and Rare Diseases at the Roche Innovation Center in Basel, Switzerland Martina Pigoni, Senior Discovery Scientist at Roche Innovation Center in Basel, Switzerland HostJanet Rossant, Editor-in-Chief, Stem Cell Reports and The Gairdner FoundationSupporting ContentApoE4 disrupts intracellular trafficking and iron homeostasis in a reproducible iPSC-based model of human brain endothelial cells, Stem Cell ReportsAbout Stem Cell ReportsStem Cell Reports is the open access, peer-reviewed journal of the International Society for Stem Cell Research (ISSCR) for communicating basic discoveries in stem cell research, in addition to translational and clinical studies. Stem Cell Reports focuses on original research with conceptual or practical advances that are of broad interest to stem cell biologists and clinicians.X: @StemCellReportsAbout ISSCRWith nearly 5,000 members from more than 80 countries, the International Society for Stem Cell Research (@ISSCR) is the preeminent global, cross-disciplinary, science-based organization dedicated to stem cell research and its translation to the clinic. The ISSCR mission is to promote excellence in stem cell science and applications to human health.ISSCR StaffKeith Alm, Chief Executive OfficerYvonne Fisher, Managing Editor, Stem Cell ReportsKym Kilbourne, Director of Media and Strategic CommunicationsMegan Koch, Senior Marketing ManagerJack Mosher, Scientific DirectorHunter Reed, Senior Marketing Coordinator

In this episode of BioTalk Unzipped, Gregory Austin and Dr. Chad Briscoe sit down with Dr. Binodh DeSilva, Senior Vice President of Bioanalysis at Ultragenyx Pharmaceutical, to explore the science and soul behind rare-disease drug development.From her early days studying electrochemistry at the University of Kansas to leading cutting-edge bioanalytical programs at Ultragenyx, Dr. DeSilva shares how curiosity and community shaped her four-decade career. She discusses the profound responsibility of working with limited, often irreplaceable patient samples with care.A special thanks to AAPS (https://www.aaps.org/) for their help and support of this episode.The conversation dives into:Balancing rigor and agility in small-population clinical studiesLeveraging entrepreneurial mindsets from biotech within big pharma frameworksThe promise of dried blood spots (DBS) and patient-centric samplingMentorship, curiosity, and the future of scientific leadershipHer return to Sri Lanka with KU faculty to recruit the next generation of scientistsThroughout the discussion, DeSilva underscores a recurring theme: science thrives when curiosity meets compassion. This episode is a masterclass in both.Guest LinksDr. Binodh DeSilvahttps://www.linkedin.com/in/binodh-desilva/ Ultragenyx Pharmaceuticals - https://www.ultragenyx.com/ HostsDr. Chad Briscoehttps://www.linkedin.com/in/chadbriscoe/ Celerion - https://www.celerion.com/ Gregory Austinhttps://www.linkedin.com/in/gregoryaustin1/ Celerion - https://www.celerion.com/ Keywords: BioTalk Unzipped, Binodh DeSilva, Ultragenyx, rare disease research, bioanalysis, dynamic drug development, dried blood spots, DBS sampling, biologics, AAPS NBC 2025, Gregory Austin, Chad Briscoe, Celerion, scientific leadership, mentorship in science, biopharma innovation, curiosity in research, Sri Lanka scientists, analytical chemistry, pharma innovation, drug development ethics.

Sally Wolf is back in the studio and this time we left cancer at the door. She turned 50, brought a 1993 Newsday valedictorian article as a prop, and sat down with me for a half hour of pure Gen X therapy. We dug into VHS tracking, Red Dawn paranoia, Michael J. Fox, Bette Midler, and how growing up with no helmets and playgrounds built over concrete somehow didn't kill us.We laughed about being Jewish kids in the suburbs, the crushes we had on thirty-year-olds playing teenagers, and what it means to hit 50 with your humor intact. This episode is part nostalgia trip, part roast of our own generation, and part meditation on the privilege of being alive long enough to look back at it all. If you ever watched Different Strokes “very special episodes” or had a Family Ties lunchbox, this one's for you.RELATED LINKSSally Wolf Official WebsiteSally Wolf on LinkedInSally Wolf on InstagramCosmopolitan Essay: “What It's Like to Have the ‘Good' Cancer”Oprah Daily: “Five Things I Wish Everyone Understood About My Metastatic Breast Cancer Diagnosis”Allure Breast Cancer Photo ShootTom Wilson's “Stop Asking Me the Question” SongFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

“When I was in medical school, no one had even heard of mitochondrial disease. Today, every student who graduates here knows what it is and has seen a patient with it,” says Dr. Mary Kay Koenig, director of the Center for the Treatment of Pediatric Neurodegenerative Disease at UTHealth Houston McGovern Medical School. That remarkable change in awareness has been accompanied by advances in genetic sequencing, the development of clinical guidelines, and the emergence of potential treatments in some forms of mitochondrial disease. In fact, Dr. Koenig's multidisciplinary team at UTHealth's Mitochondrial Center of Excellence has been a key player in clinical trials that may yield the first FDA-approved treatments for it. As you'll learn in this Year of the Zebra conversation with host Michael Carrese, her work in neurodegenerative diseases also includes tuberous sclerosis, where advanced therapies have replaced the need for repeated surgeries, and Leigh Syndrome, which has seen improvements in diagnoses and supportive therapies leading to better quality of life for patients.  Tune in as Dr. Koenig reflects on an era of progress in the space, the rewards of balancing research, teaching and patient care, and the need for more clinicians to center listening, humility and honesty in their approach to caring for rare disease patients and their  families.Mentioned in this episode:Mitochondrial Center of ExcellenceCenter for the Treatment of Pediatric Neurodegenerative Disease If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

In this heartfelt episode of It Happened To Me, hosts Cathy Gildenhorn and Beth Glassman sit down with Nikki McIntosh, a rare disease advocate, writer, and mother whose life changed when her son Miles was diagnosed with Spinal Muscular Atrophy (SMA). Nikki McIntosh is the founder of Rare Mamas®, a resource, and community dedicated to supporting and empowering mothers of children with rare diseases. She is the author of Rare Mamas: Empowering Strategies for Navigating Your Child's Rare Disease and host of the Rare Mamas Rising podcast. Her mission stems from the profound need she felt after her son was diagnosed with a rare disease, fueling her with a passion and purpose to offer a lifeline of hope and connection to other rare moms. Nikki is a sought-after speaker and a trusted voice in the rare disease space. From national conferences and patient advocacy group gatherings to biotech industry meetings and media interviews, Nikki passionately advocates for the rare disease community. She lives in Southern California with her husband, Tony, and their sons, Mason and Miles. In 2013, at just eighteen months old, Nikki's youngest son, Miles, was diagnosed with spinal muscular atrophy (SMA)—a rare, degenerative neuromuscular disease. Told there was no treatment, no cure, and that regression was inevitable, Nikki refused to accept a future that offered only decline. She walked away from her career and poured herself into caregiving, advocacy, and an unrelenting search for answers. That search led her and her husband to a clinical trial for a drug that showed promise. Miles was enrolled. The treatment was effective. That drug—now known as Spinraza—went on to become the first-ever FDA-approved treatment for SMA. From that breakthrough moment, Nikki immersed herself in the world of rare disease advocacy. She began writing down everything she wished she had known at the beginning of their journey. With a deep desire to empower other rare moms, she wrote the book Rare Mamas: Empowering Strategies for Navigating Your Child's Rare Disease. Nikki continues to walk this road alongside her son, and alongside the millions of mothers who are parenting children with rare diseases. She has a deep passion for providing strategies, strength, support, and sisterhood to her fellow rare moms. In This Episode, You'll Learn: What Spinal Muscular Atrophy (SMA) is and how it affects children and families Nikki's emotional journey from diagnosis to advocacy How her son's participation in a clinical trial offered hope and insight The inspiration behind Rare Mamas and its empowering message Strategies for parents navigating rare disease diagnoses and complex healthcare systems The importance of building community and finding your voice as a caregiver How to balance hope for new treatments with the daily realities of care Resources:  Nikki's website that houses all her projects, RareMamas.com  Buy Nikki's book: Rare Mamas: Empowering Strategies for Navigating Your Child's Rare Listen to Nikki's podcast: Rare Mamas Rising Learn more about SMA via MedlinePlus Patient Empowerment Program, another podcast in our science podcast network Gene Pool Media, is hosted by one of the pharmacists that helped develop Spinraza, the first FDA approved treatment for SMA. Miles was part of the clinical trial.  Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.

In this episode of Radio Maine, Dr. Lisa Belisle welcomes back Dr. Chuck Radis—rheumatologist, author, and storyteller—to discuss his newest book, Mystery in the Room (RHEUM): A Physician's Journey Treating Patients with Rare Diseases. Drawing inspiration from Oliver Sacks and John McPhee, Dr. Radis blends medical insight with personal reflection, exploring the art of diagnosis, the humanity behind clinical encounters, and the balance between science and empathy. Together, they discuss how technology, including AI, might paradoxically help physicians reconnect with patients, why listening remains medicine's most powerful diagnostic tool, and how life on Peaks Island continues to shape Dr. Radis's perspective as both a doctor and a writer. Radio Maine is proudly sponsored by the Portland Art Gallery, where we explore and celebrate creativity and the human spirit.

Dr. Nikki Maphis didn't just lose a grant. She lost a lifeline. An early-career Alzheimer's researcher driven by her grandmother's diagnosis, Nikki poured years into her work—only to watch it vanish when the NIH's MOSAIC program got axed overnight. Her application wasn't rejected. It was deleted. No feedback. No score. Just gone.In this episode, Oliver Bogler pulls back the curtain on what happens when politics and science collide and promising scientists get crushed in the crossfire. Nikki shares how she's fighting to stay in the field, teaching the next generation, and rewriting her grant for a world where even the word “diversity” can get you blacklisted. The conversation is raw, human, and maddening—a reminder that the real “war on science” doesn't happen in labs. It happens in inboxes.RELATED LINKS:• Dr. Nikki Maphis LinkedIn page• Dr. Nikki Maphis' page at the University of New Mexico• Vanguard News Group coverage• Nature article• PNAS: Contribution of NIH funding to new drug approvals 2010–2016FEEDBACK:Like this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, visit outofpatients.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

“Giving learners options gives them a better learning experience. It's more holistic and more comprehensive,” says Sean Moloney, CEO and founder of EmbodyXR, an extended reality platform focused on the use of immersive technologies in medical education. In this eye-opening Raise the Line conversation, Moloney explains how AI-powered extended reality (XR) --which integrates augmented, virtual, and simulation-based environments -- allows learners to interact with patients, explore multiple diagnostic choices, and experience varied outcomes based on their decisions. The result, he notes, is not only stronger engagement in learning, but a measurable improvement in understanding. Despite these gains, Moloney is quick to point out that he sees these technologies as complements to traditional training, not substitutes for it. “We'll never replace in-person teaching,” he says, “but we can make learners even better.” Beyond training future clinicians, the EmbodyXR platform is also offering new modes of patient and caregiver education, such as augmented reality guidance for using medical devices at home. Join host Lindsey Smith as she explores how EmbodyXR achieves and maintains clinical accuracy, the connectivity it offers between headsets, personal computers and mobile devices, and other capabilities that are shaping the future of how healthcare professionals and patients will learn. Mentioned in this episode:EmbodyXR If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

Partnerships between biopharmaceutical companies and patient organizations can play a critical role in improving access and outcomes for people with rare diseases. However, to do so, companies must listen to patient communities and address the unique challenges they face. We spoke to Laura Russo, U.S. patient engagement lead for Pfizer, discusses how the company's patient-facing teams work to bridge health systems and patient communities, how they help people with rare diseases navigate the healthcare system, and how they improve access through customized approaches ranging from providing transportation to care for people with sickle cell disease to providing education and support to community health workers.

Carla Tardiff has spent 17 years as the CEO of Family Reach, a nonprofit that shouldn't have to exist but absolutely does—because in America, cancer comes with a price tag your insurance doesn't cover.We talk about shame, fear, burnout, Wegmans, Syracuse, celebrity telethons, and the godforsaken reality of choosing between food and treatment. Carla's a lifer in this fight, holding the line between humanity and bureaucracy, between data and decency. She's also sharp as hell, deeply funny, and more purpose-driven than half of Congress on a good day.This episode is about the work no one wants to do, the stuff no one wants to say, and why staying angry might be the only way to stay sane.Come for the laughs. Stay for the rage. And find out why Family Reach is the only adult in the room.RELATED LINKSFamily ReachFinancial Resource CenterCarla on LinkedInMorgridge Foundation ProfileAuthority Magazine InterviewSyracuse University FeatureFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Why has America struggled so much to effectively manage the opioid use crisis? One of the answers, as you'll learn in this eye-opening episode of Raise the Line, is rooted in laws and attitudes from the early 20th century that removed addiction from the realm of medicine and defined it as a moral failing.  “The federal Harrison Act of 1914 forbade any physician from prescribing opioids to people with addiction, so it became more the purview of law enforcement or behavioral health or religion,” says Dr. Melody Glenn, who regularly confronts the consequences of this history during shifts in the emergency department at Banner-University Medical Center in Tucson, Arizona. And as Glenn explains to host Caleb Furnas, the resulting stigma associated with addiction has extended to the treatments for it as well, especially methadone, despite its effectiveness. Drawing on her dual expertise in emergency and addiction medicine, Glenn dispels misconceptions that medication-assisted treatment merely replaces one addiction with another, and emphasizes that harm reduction is critical to saving lives. Her desire to break prevailing stigmas led her to discover the story of Dr. Marie Nyswander, who pioneered methadone maintenance therapy in the 1960s and is featured in Dr. Glenn's new book, Mother of Methadone: A Doctor's Quest, a Forgotten History, and a Modern-Day Crisis. You'll leave this instructive interview understanding the roots of our flawed approach to addiction treatment, meeting an overlooked pioneer in the field, and admiring a devoted and compassionate physician who is following in her footsteps.  Mentioned in this episode:Banner-University Medical CenterMother of Methadone book If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

Five years ago, we first spoke with Nikki McIntosh. In this episode, Nikki returns to share her journey as a mother of a child with spinal muscular atrophy (SMA) and the profound impact of clinical trials on her son's life. Miles is growing up and has started playing wheelchair tennis. Nikki shares the joy this brings to her. Nikki also discusses the emotional roller coaster of navigating rare diseases, the importance of community support, and her new book, 'Rare Mamas: Empowering Strategies for Navigating Your Child's Rare Disease.' The conversation and the book highlight resilience, advocacy, and the need for actionable strategies for parents facing similar challenges.https://raremamas.com

“We don't view a person with chronic pain as someone who has a chronic illness and the effect of that is we can't follow patients continuously over prolonged periods of time,” says Dr. Jacob Hascalovici, a neurologist and pain specialist based in New York City.  In co-founding Bliss Health, Dr. Jacob, as he is known, has set out to create a continuous care model for chronic pain treatment that matches the approach taken for patients with diabetes or high blood pressure. The Bliss Health formula includes an initial meeting with a physician that produces a care plan; remote therapeutic monitoring on an ongoing basis; and a monthly meeting with a nurse to review data and determine next steps, including additional appointments with physicians as needed.  All of this occurs via a digital platform which provides a welcome option for patients with mobility issues and can fill gaps in access to specialists, especially in rural areas. Dr. Jacob is also hoping to make chronic pain patents feel respected, which is not always the case in their encounters with the healthcare system. “Because pain is not something that can be seen or measured, oftentimes patients feel marginalized, dismissed and disempowered by providers.” Join Raise the Line host Lindsey Smith for a valuable conversation that also touches on policy changes that could strengthen telemedicine, and has details on the first non-opioid based pain medication to receive FDA approval in over 20 years.Mentioned in this episode:Bliss Health If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast

Hunter syndrome is caused by the body's inability to produce a critical enzyme needed to break down cellular waste. The condition can cause damage to organs throughout the body as well as to the brain. A new generation of therapies in development, including a gene therapy currently under review by the U.S. Food and Drug Administration, that has the potential to address the neurological symptoms of the disease. Still, patient advocates have been frustrated by regulatory delays and are seeking to push the FDA and Congress to take action. We spoke with Kristin McKay, CEO of the Hunter syndrome patient advocacy organization Project Alive, about the need for new therapies, the importance of early detection, and the patient community's concerns with regulatory delays in approving needed treatments. An editor's note: Since recording this podcast, the FDA granted accelerated approval to Stealth Biotherapeutics' Forzinity for Barth syndrome, which is referenced in the discussion.

Jennifer J. Brown is a scientist, a writer, and a mother who never got the luxury of separating those roles. Her memoir When the Baby Is Not OK: Hopes & Genes is a punch to the gut of polite society and a medical system that expects parents to smile through trauma. She wrote it because she had to. Because the people who gave her the diagnosis didn't give her the truth. Because a Harvard-educated geneticist with two daughters born with PKU still couldn't get a straight answer from the very system she trained in.We sat down in the studio to talk about the unbearable loneliness of rare disease parenting, the disconnect between medical knowledge and human connection, and what it means to weaponize science against silence. She talks about bias in the NICU, the failure of healthcare communication, and why “resilience” is a lazy word. Her daughters are grown now. One's a playwright. One's an artist. And Jennifer is still raising hell.This is a conversation about control, trauma, survival, and rewriting the script when the world hands you someone else's lines.Bring tissues. Then bring receipts.RELATED LINKS• When the Baby Is Not OK (Book)• Jennifer's Website• Jennifer on LinkedInFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, visit outofpatients.show.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In recent months, public health advocates in the United States have raised concerns about proposed changes to vaccine policy, cuts to food assistance programs, rollbacks of environmental protections and reductions in public health staffing. Chief among them has been Dr. Georges Benjamin who, as executive director of the American Public Health Association (APHA) since 2002, has led national efforts to create a healthier America. Raise the Line host Lindsey Smith recently sat down with Dr. Benjamin to understand more about the current state of public health and explore the path forward, and learned that a top priority for APHA is battling the misinformation that Dr. Benjamin believes is fueling support for many of these changes. “The challenge we have right now is that as a society, we've gone into our little corners and live in our own ecosystems. More people are getting their information from a single source and they're not validating that information to make sure that it's true.” Tune into this thoughtful and timely conversation to hear Dr. Benjamin's advice for curbing the spread of misinformation, how APHA is trying to help people understand the value of public health initiatives, and what the U.S. can learn from other countries about improving public health. Mentioned in this episode:American Public Health Association If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast