Discover the extraordinary journey of living with an undiagnosed rare disease on Rare Matters Podcast. Join us as we empower, educate, and uplift each other.
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Rare Disease Advisor's Rare Care Podcast features exclusive interviews with experts and stakeholders from the rare disease community.
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Fighting sarcoidosis as well as other rare diseases.
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Wait How Do You Spell That? is a rare disease podcast produced by Patient Worthy. We talk about issues affecting people rare and underdiagnosed conditions and interview advocates from across the community. We‘re definitely not doctors, and we can‘t give you medical advice. We‘re just here to chat and learn about the diseases that even doctors can‘t seem to spell. Check out the latest in rare disease news at PatientWorthy.com.
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Welcome to P4A Let’s Talk Rare, a monthly podcast highlighting the most important developments in the world of rare diseases orphan drug, cell and gene therapy, hosted by Georgie Rack and Owen Bryant of Partners For Access. To find out more about Partners For Access and our commitment to sustainable orphan drug access for patients with high unmet need, visit partners4access.com
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Join the nano-rare disease community! Interviews features leading physicians, scientists, biotech experts, and patient advocates. Lessons teach core concepts about drugs. Our host Dr. Crooke has led the creation of antisense technology and his foundation, n-Lorem, is using this powerful technology to discover, develop, and provide personalized experimental antisense oligonucleotide medicines to nano-rare patients for free, for life. n-Lorem is a non-profit organization established to apply t ...
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The 2DD podcast is about setting sights beyond the challenges in your life and dreaming big, making a plan, and then executing like mad. You are guaranteed an emotional rollercoaster, and practical thoughts that you can apply to your life with this podcast. Hosts Sean and Kyle are both affected by a rare disease called Friedreich’s ataxia (FA). FA affects their balance and coordination, significantly limiting their physical abilities. However both dudes have completed several long distance b ...
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Out of Patients is a no-BS podcast about making healthcare suck less for everyone. Join award-winning host Matthew Zachary each week as he and his guests sardonically deconstruct all the shenanigans in terms normal humans can understand, along with a healthy dose of 80s nostalgia and random pop culture references. So strap in, and let's all make the system less horrible; because advocacy is the only thing that's ever changed anything.
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Welcome to the new Rare Kidney Disease Show part of the RKD Scientific Network sponsored by Travere Therapeutics. The Rare Kidney Disease Show is your primary source for cutting-edge insights, expert perspectives, and pivotal updates in nephrology. Led by our panel of experts, explore the advances in glomerular nephropathies through compelling conversations, challenging case studies, and discussions tackling hot topics. Join us as we strive to provide you with the ultimate resource to suppor ...
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A monthly presentation by the team at Just Worldwide on topics relevant to the Healthcare Market Research Industry. Hosted By: Shane Meeker & Mansky Charles
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Are you facing trials? Are physical and mental challenges weighing you down on our journey? Through his experiences with the rare disease myasthenia gravis, host Stephen V. Smith shares encouragement and inspiration as he seeks to create a life of meaning and connection. "Live Life Rare" is the companion podcast to the newsletter of the same name, which can be found at liveliferare.com. Join in the conversation as Stephen helps us discover and pursue what a rare life means to each of us.
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A podcast for parents and families of people living with rare diseases in Ontario. I Care for Rare is a social advocacy campaign, designed to give individuals, families and caregivers living with rare diseases a collective voice for system healthcare AND community support reform.
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Welcome to 'My rare disease' podcast. This is a platform where I raise awareness of something that affects 1 in 15 people, rare disease. By chatting to patients, health professionals and advocates, we talk about all aspects of rare disease including relationships, mental health and much more. I cannot wait for you to hear some truly inspiring stories from some absolutely amazing people. From being diagnosed with a rare disease myself at 10 weeks old, it has given me the motivation to give ot ...
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RARECast is a Global Genes podcast hosted by award-winning journalist Daniel Levine. It focuses on the intersection of rare disease with business, science, and policy.
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Welcome to RARING, the voice of the rare disease community and a no-BS forum for patients and their families, rare disease patient organizations, and medical professionals. If you live with a rare disease or love someone who does, RARING is the podcast for you, by you, and with you every day. Tune in to hear leading experts discussing next-generation diagnostics and treatments. Learn from passionate nonprofit leaders talking about their highs and lows fighting for their communities. And laug ...
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Rare Voices reveals the wisest path to a fulfilled life for patients with rare and orphan disorders. Brought to you by the people at Optime Care, a pioneering specialty pharmacy. In each episode, we uncover insights from patient advocates, pharmaceutical innovators, leaders in insurance, physicians, and caregivers. Prepare to provoke your mind and fuel your drive to serve rare and orphan patient populations.
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I am a fellowship-trained and Board Certified Sleep Medicine specialist, and chronic insomniac turned sleep biohacker, who is on a mission to empower my listeners to improve their sleep naturally. Season 2 will explore insomnia as a symptom of other deeper issues and sleep disorders. It is all about circadian misalignment, sleep apnea, rare central disorders of hypersomnia, and beyond. Wellness is about maintaining our health as long as possible, and maximizing our potential for restful slee ...
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Candid conversations with leading doctors, patients, researchers, and families in rare disease communities.
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Rare in Common is a podcast about the unique stories of people affected by rare disease. Host Andra Stratton, a rare disease advocate, speaks with different members of the rare disease community, including patients, caregivers, healthcare professionals, and researchers. Join us as we tackle topics such as FDA approvals, national awareness campaigns, finding hope and support within the rare community, and the extraordinary challenges of living with a rare disease. Click. Listen. Feel.
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INNERSIGHT FREEDOM Frank Perino - Host Suzanne SUZLADY INNERSIGHT Means FREEDOM Advocates for the Disabled! INNERSIGHT FREEDOM fights for Independence, Equality, Total Accessibility, Enforcement and Disability Rights! Millions of us who are disabled, would like to serve our country but can not because there are too many obstacles in the way. People are forced to go in nursing homes and lose their homes, money, jobs, possessions, and many have contracted COVID and died when they could have be ...
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Everyone in the rare disease community has a story and every individual, every parent, every caregiver has a unique story to tell. Insightful Moments: My VIBE is here to tell those stories. We want to tell YOUR real-life stories and experiences from the rare disease community to inspire and remind listeners that we’re all in this together.
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This podcast is a "best of" lineup of the top posts on strugglingtothrive.com. All material except the introduction is also available on our website in written format.
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I want to share information about living with and dealing with a chronic or invisible disease. This is made even more difficult if the disease is rare. I'll share my story and also invite some guests to share their viewpoints and experiences. There are hundreds of different types of diseases out there that are invisible and can the sufferer feel more alone. I'm hoping to help the patient, families and other support systems better communicate and empathize with each other. ***Disclaimer - Thi ...
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Welcome to the because we are a strong podcast. A podcast inspired by stories of struggle and strength. A place where you can feel safe enough to share every part of your rare story. The good, the bad, the happy, and anything in between. Many times those in the rare disease community feel isolated from the rest of the world. Rare disease comes with its own set of unique challenges, ones that are hard for the outside world to understand. Through our stories, we can bridge the gap between a la ...
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Weekly podcasts from Science Magazine, the world's leading journal of original scientific research, global news, and commentary.
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This podcast, hosted by Dr. Wally Smith of Virginia Commonwealth University, features interviews of diverse leading experts including researchers, physicians, and individuals living with the disease, exploring the history of the disease, the global impact and need for additional providers, disparity and bias in sickle cell disease, and promising news regarding the management and treatment of sickle cell disease. Learn about the past, present and future of sickle cell, and join us in the figh ...
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Curious, knowledgeable wife of an Ataxian. My mission is to share reputable Ataxia information in short, simple, digestible servings. I want the world to become acquainted with Ataxia and the way it robs someone of their balance, coordination, ability to walk, talk, swallow, and see.
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In our series of podcasts, FIECON team members engage with patient advocates and thought leaders to explore the burden, unmet needs, patient journey, and potential future treatments for specific diseases, with the aim of gaining a deeper understanding of the patient's perspective, particularly for rare diseases. At FIECON, we are dedicated to ensuring that life-changing treatments reach the patients who truly need them, while also increasing awareness and amplifying the patient voice to make ...
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Ovid Therapeutics is a company focused exclusively on developing impactful medicines for patients and families living with rare neurological disorders. Hosted by Amit Rakhit, MD, MBA, this is our podcast. This is Bold Medicine.
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We explore the unique lives and work of our community's leaders, professionals, and inspirational members--conversations about the challenges, courage, and dedication that are pillars of this community. We share new perspectives, insights, and knowledge about the rare disease that impacts our daily lives and guides our individual journeys. The National MPS Society exists to cure, support and advocate for MPS and ML.
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This is CoRDS Cast, a rare disease podcast created by the team at Sanford Research. Our rare disease registry, CoRDS, connects patients and researchers everywhere. Here, you'll hear interviews with patients, patient advocates, physicians, and researchers to raise awareness about the 7,000 rare conditions affecting 1 in 10 people worldwide.
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Primary sclerosing cholangitis (PSC) is a rare disease that affects the bile ducts inside and outside of the liver. There is no cure, and no treatments exist to slow the progression of PSC. This podcast, moderated by Niall McKay, explores the latest research and knowledge about PSC: from patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to find better treatments and a cure, this podcast has it all! PSC Partners Seeking a Cure is a nonprofi ...
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The AOP Health Group is the European pioneer for integrated therapies for rare diseases and in critical care. Over the past 25 years, the Group has become an established provider of integrated therapy solutions and has a highly consistent and pragmatic orientation towards the needs of all its stakeholders– especially the patients and their families as well as also the healthcare professionals treating them.
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Disclaimer: Opinions shared in this podcast may not reflect the opinions of Catalyst Pharmaceuticals, Inc. Let’s talk about rare diseases. The LEMS Aware Podcast lets you hear directly from people in the Lambert-Eaton myasthenic syndrome (LEMS) and other rare disease communities on topics that matter. We talk with patients and caregivers who want to share more than their story – they want to ignite conversations about LEMS and common rare disease experiences and needs. Join us as we talk abo ...
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Answers to your medical questions and health topics in the news.
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Ready, set grow — You’re ready to enter a new market, but you don’t speak the language, and don’t know the culture. Don't miss this 15-minute podcast featuring language industry experts as they tackle the biggest challenges in localization, translation, and every aspect of multilingual marketing.
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Over 150+ Episodes. We speak to Pharma & Biotech Industry leaders and hear their stories of personal and professional growth. Perfect for both aspiring leaders and experienced individuals looking to help make a positive impact in the world of Clinical Research.
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Pediatric Endocrinologists of Texas, Oklahoma, Louisana, and Arkansas (PESTOLA) Endocrine Podcast brings you the latest in all things related to pediatric endocrinology.
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Arthritis life features real patient stories, expert advice, life hacks and more to help you feel more empowered and less alone. Host Cheryl Crow shares her insights from both as a rheumatoid arthritis patient for seventeen years and as an occupational therapist, a health profession that focuses on empowering people with health challenges to function in their daily lives. This podcast will also include reflections on how you can have the best quality of life possible despite chronic pain, an ...
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We are at a watershed moment in healthcare. The entire industry is being compelled to question old assumptions and chart a new path forward - in a word, we need to pivot. This podcast hosted by the editorial team at MedCity News will highlight the strategies, the companies and the personalities spearheading this monumental transformation.
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This podcast is about the advancement of rare disease research told by health professionals, researchers, parents, and advocates. This podcast is for you to learn how newborn screening research saves the lives of babies every day through discoveries of new technologies and treatments. You will hear stories from experts who treat babies, the families who care for them, and the researchers who make it all happen.
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Welcome to the Indian Edit, a new series of in-depth interviews with inspiring entrepreneurs, educators and culture-makers. Subscribe here on iTunes and stay updated at http://theindianedit.com and on instagram @theindianeditpodcast
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Practicing Clinicians Exchange keeps advanced practice providers up to date with timely interviews from the front lines on current advances and best practices in medicine. Many of the podcasts are available for CE/CME credit.
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BloodStream is an entertaining and informational podcast for the bleeding disorders community. Each week, hemophilia patient Patrick James Lynch and former non-profit director Amy Board are joined by advocacy leaders, medical experts, and other guests to discuss the latest news, scientific advancements, policy initiatives, and so much more. Subscribe wherever you listen, or search BloodStream Podcast on YouTube to catch every episode there. Produced by Believe Limited. Presenting sponsor: Ta ...
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As a new parent of a child with a rare genetic syndrome, I was lost. There was no guide. There was no rulebook. This was not what I had imagined. As I navigated my way through this new reality, I realized something that should have been simple, but was not. A truth that had always been there, but that I had lost sight of for a time - I am not alone. And neither are you. These are the stories of my family, and of families like ours. These are the stories of how we have persevered, cried, bond ...
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Our COR2ED podcast brings together world-renowned medical experts to discuss and provide clear guidance on the latest scientific and clinical insights in various therapeutic areas, including oncology, cardiology, hemostasis, rare diseases, hemato-oncology, and endocrinology. At COR2ED, we are committed to providing balanced and evidence-based independent medical education to support healthcare professionals in enhancing patient care. Many of our podcast episodes are created in collaboration ...
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Each month Your Child’s Brain will bring together experts in child brain health, including researchers, educators, physicians and therapists as well as families to discuss contemporary topics about child and youth brain health and development. Your Child's Brain is produced by Kennedy Krieger Institute with assistance from WYPR.
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We are talking about everything goats! Whether you're an owner, a breeder, or just a fan of these wonderful creatures, we've got you covered. Join host and author Deborah Niemann as she interviews experts and goat lovers so we can all learn more about how to improve the health and production of our goats, improve our relationships, and possibly even start a goat business.
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Each week the MPR team brings you the top stories from the world of medicine and pharma in a matter of minutes. With 35 years of publishing drug information behind us, you can rely on MPR to provide accurate and up-to-date news.
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Episode 112 | aTyr is getting closer to a new drug to fight sarcoidosis.
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Joining me today on the FSr Sarc Fighter Podcast is Sanjay Shukla, CEO of aTyr Pharma. Sanjay returns to the podcast with a promising update on Efzofitimod, the most promising candidate to become the first drug developed specifically to fight sarcoidosis. Sanjay joins the podcast from Brazil, just one of the countries around the world, where the dr…
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250 - Thriving with Duchenne - Rare Disease Day with Jett Foundation
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Our friends at Jett Foundation invited us into their community once again for a conversation with 5 panelists on Rare Disease Day. We were honored to moderate the discussion with these friends: Race Martinez - Architecture Student, living with Duchenne Kris Napper - Graphic Designer/Illustrator, Business Owner, living with SMA Chris Schlechty - Sof…
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My Story: LIving with an Undiagnosed Rare Disease and Winning The Genetic Lottery
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Introducing the inaugural episode of Rare Matters Podcast, where host Mikey Stone courageously delves into his personal odyssey living with an undiagnosed rare disease. In this groundbreaking debut, Mikey offers an intimate glimpse into his profound medical journey, unraveling the complexities of his diagnosis quest like never before. Through candi…
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Physicians and Institutions Transform the Lives of Nano-rare Patients with Olivia Kim-McManus, M.D.
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Research physicians and their associated institutions are monumental to the mission of the n-Lorem Foundation and are truly transformational to the lives of the nano-rare patients they treat. Olivia Kim-McManus, M.D., was one of four physician panelists at our first Colloquium who participated in "A Physician's Perspective on n-Lorem and Nano-rare"…
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The Bespoke Gene Therapy Consortium's New Regulatory Playbook, feat. The Foundation for the National Institutes of Health and Taylor's Tale
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In this episode of the podcast we talk with Drs. Julie Gerberding and Courtney Silverthorn from the Foundation for the National Institutes of Health (FNIH). They're bringing us updates on the Bespoke Gene Therapy Consortium's new regulatory playbook that is designed to help get certain types of genetic therapies for rare diseases approved and avail…
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Unraveling Health Mysteries: From the Microbiome to Mental Wellness to a rare disease from listener email
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KSQD 4-04-2024: This episode delves into a range of health topics, beginning with a unique case where a bone marrow transplant offered new hope for treating schizophrenia. We discuss the complexities of diseases such as sickle cell anemia and their unexpected interactions with other conditions. Our conversation extends to the gut microbiome, highli…
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Determining the Value of Rare Disease Therapies
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The small patient populations of rare diseases, the limited natural history of these conditions, and the lack of long-term experience with new treatments all contribute to the difficulty in determining the value of rare disease therapies. The issue can be further complicated by whether value is calculated in a single payer system, or a multi-payer …
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116: An Interview With Seema Lalani, MD, Director of Project GIVE, a Pediatric Rare Disease Screening Program in the Rio Grande Valley of Texas
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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Seema Lalani, MD, of Baylor College of Medicine in Houston, Texas. Dr. Lalani directs Project GIVE (Genetic Inclusion by Virtual Evaluation), a pediatric screening program in the impoverished 4-county Rio Grande Valley region of southern Texas.…
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Rare Disease Alert: Idiopathic Hypersomnia, featuring Logan Schneider
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Dr. Logan Schneider, MD is a physician scientist specializing in Neurology and Sleep Medicine. He is a clinical assistant professor affiliated with Stanford University, a Neurologist at the Stanford/VA Alzheimer's Research Center, and a Clinical Specialist at Alphabet. On this episode, he discusses idiopathic hypersomnia (IH), a central disorder of…
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Inside Rare Disease Clinical Trials: A Personal Story
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In the tenth episode of the Welocalize podcast, regular host Louise Law chats with Joe Tyler, Life Sciences Director at Welocalize. Diagnosed with Friedreich’s ataxia (FA) in his 20s, Joe shares his first-hand experience participating in a global clinical trial for SKYCLARYS®.By Welocalize
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[HIATUS] THE SICKLE: Building a Support System with Sickle Cell Disease (Episode Two)
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Sickle cell disease (SCD) can affect many areas, including daily life, and some of the effects can be lifelong. More so, SCD impacts the quality of life for many patients in the form of depression, anxiety, executive function, and more. In partnership with The Sickle Cell Disease Association of America, Matthew Zachary Worldwide presents “The Sickl…
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INNERSIGHT FREEDOM MAD OR GLAD MONDAYS FRANK PERINO HOST SUZANNE SUZLADY INNERSIGHT MEANS FREEDOM ADVOCATES FOR THE DISABLED PLEASE LISTEN TO OUR MAD OR GLAD MONDAYS. BlogTalkRadio/innersightinfo and sign our petitions on change.org (Search for INNERSIGHT)By INNERSIGHT FREEDOM
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What do People with Rheumatoid Arthritis Need to Know about COVID-19 in 2024?
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Dr Dave & Dr Campbell answer Cheryl’s burning questions about long COVID, vaccine efficacy and safety for people with autoimmune conditions, and potential links between autoimmunity and long COVID. They also talk about cutting edge research and new therapies including CAR T-cell therapy. Dr. Campbell encourages participation in research studies to …
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Big food's bad advice, mini-livers, infection advice, neuropeptides for depression, a listener book recommendation, and your health questions answered
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KSQD 4-17-2024: This week's show explores the line between helpful health advice and harmful food-related misinformation, particularly the anti-diet trend being promoted by certain influencers. We delve into a fascinating medical breakthrough involving the creation of "mini livers" to support patients awaiting transplants.Listeners offered valuable…
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INNERSIGHT FREEDOM FRIDAY NIGHT FOLLIES
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INNERSIGHT FREEDOM FRIDAY NIGHT FOLLIES FRANK PERINO HOST SUZANNE SUZLADY INNERSIGHT MEANS FREEDOM ADVOCATES FOR THE DISABLEDBy INNERSIGHT FREEDOM
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Innovating Diagnostic Tools with AI: A Deep Dive into Arrow DX's Journey |Ep75
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Dr. Sanjeev Chopra, a professor of medicine at Harvard Medical School and Edward Alano, founder of Arrow DX share groundbreaking insights on the intersection of AI, machine learning, and healthcare in our latest podcast episode. Dr. Chopra and Edward discuss their journey and vision for transforming the healthcare industry using cutting-edge techno…
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INNERSIGHT FREEDOM IN MEMORY OF COREY FOSTER
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INNERSIGHT FREEDOM IN MEMORY OF COREY FOSTER FRANK PERINO HOST SUZANNE SUZLADY INNERSIGHT MEANS FREEDOM ADVOCATES FOR THE DISABLEDBy INNERSIGHT FREEDOM
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Ritual murders in the neolithic, why 2023 was so hot, and virus and bacteria battle in the gut
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A different source of global warming, signs of a continentwide tradition of human sacrifice, and a virus that attacks the cholera bacteria First up on the show this week, clearer skies might be accelerating global warming. Staff Writer Paul Voosen joins host Sarah Crespi to discuss how as air pollution is cleaned up, climate models need to consider…
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From Classrooms to Communities - Parents Visionary Journey in Education, Living, and Advocacy for Inclusion and Epilepsy Funding with Jillian and Scott Copeland
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ONCE UPON A GENE - EPISODE 226 From Classrooms to Communities - Parents Visionary Journey in Education, Living, and Advocacy for Inclusion and Epilepsy Funding with Jillian and Scott Copeland Jillian and Scott Copeland are husband and wife, advocates and pioneers who have transformed their personal journey of having a child diagnosed with epilepsy.…
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A Small Molecule Therapy to Regenerate Muscle in People with DMD
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Duchenne muscular dystrophy is an inherited disease caused by genetic mutations that no longer allow the dystrophin protein to function properly. It turns out that dystrophin not only plays a role in muscle fiber, but in muscle stem cells as well and is critical for regeneration of muscle tissue. Without dystrophin, people with Duchene suffer progr…
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INNERSIGHT FREEDOM TURN NURSING HOMES INTO ACCESSIBLE HOUSING
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INNERSIGHT FREEDOM TURN NURSING HOMES INTO ACCESSIBLE HOUSING SUB-THEME: NURSING HOMES RUIN THE ECONOMY INNERSIGHT MEANS FREEDOM ADVOCATES FOR THE DISABLEDBy INNERSIGHT FREEDOM
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[HIATUS] THE SICKLE: Living with Sickle Cell Disease (Episode One)
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Sickle cell disease (SCD) can affect many areas, including daily life, and some of the effects can be lifelong. More so, SCD impacts the quality of life for many patients in the form of depression, anxiety, executive function, and more. In partnership with The Sickle Cell Disease Association of America, Matthew Zachary Worldwide presents “The Sickl…
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118: An Interview With Sharon Hesterlee, PhD, Chief Research Officer at the Muscular Dystrophy Association
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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sharon Hesterlee, PhD, chief research officer at the Muscular Dystrophy Association, about the recent proliferation of gene therapies and other treatments for neuromuscular diseases.By Rare Care Podcast
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249 - 20 Years in the Making: REATA's Story of Skyclarys
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This episode delves into the journey of Skyclarys, the first FDA-approved treatment for Friedreich's ataxia (FA), a rare genetic disorder. The discussion features Dr. Colin Meyer, former executive at Reata Pharmaceuticals, who shares his experiences from the inception of Reata to the acquisition by Biogen. The conversation offers a compelling narra…
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Animal Surprises: Pig Donor Organs, Surprising evidence of animal intelligence, and How Potassium Lowers Blood Pressure
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KSQD 4-10-2024: This episode explores the cutting-edge of medical science and the wonders of the animal kingdom. We'll discuss a remarkable first – the successful transplant of a genetically modified pig kidney into a human. Could this breakthrough pave the way for the future of organ donation? On a different note, did you know cows are being engin…
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INNERSIGHT FREEDOM FRIDAY NIGHT FOLLIESBy INNERSIGHT FREEDOM
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MPR Weekly Dose 199 — Fasenra Expanded Approval; HIV Tx Approval Expanded; ALS Drug Discontinued; CRL for Apomorphine Device; At-Home Mpox Test
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Asthma treatment gains approval for severe cases in pediatrics; Dovato gains expanded indication; Decision taken to remove ALS drug from market; Complete Response Letter issued for apomorphine device; At-home Mpox test kit made available.
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We have newly appointed NBDF CEO, Phil Gattone with us sharing his background and his vision for the organization and community. And, we have the story of the first commercially dosed patient of hemophilia B gene therapy. Hear from Jamison Buxton, the father of the patient…who also happens to be the director of the HTC. Show Notes: Subscribe: The B…
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INNERSIGHT FREEDOM BETTER SAFETY IN GUIDE DOG SCHOOLS
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INNERSIGHT FREEDOM BETTER SAFETY IN GUIDE DOG SCHOOL THIS SHOW IS DEDICATED TO SHARREABLE AND MILTON. PLEASE CHECK OUT OUR SHOW TONIGHT LOCALLY ON ALTICE CHANNEL 115 AT 9:00 P.M. FRANK PERINO HOST SUZANNE SUZLADY INNERSIGHT MEANS FREEDOM ADVOCATES FOR THE DISABLEDBy INNERSIGHT FREEDOM
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Trialing treatments for Long Covid, and a new organelle appears on the scene
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]Researchers are testing HIV drugs and monoclonal antibodies against long-lasting COVID-19, and what it takes to turn a symbiotic friend into an organelle First up on the show this week, clinical trials of new and old treatments for Long Covid. Producer Meagan Cantwell is joined by Staff Writer Jennifer Couzin-Frankel and some of her sources to dis…
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“Disability is not a Dirty Word:” Catherine’s Story of Fierce Hope & Young Patient Advocacy
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Through sharing her own story publicly, Catherine learned the importance of disability representation and advocacy for young people. She also delves into why it is crucial to include the voices of young adults in the research and advocacy process. Cheryl and Catherine explore the process of dismantling their own internalized ableism and challenging…
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The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman
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ONCE UPON A GENE - EPISODE 225 The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman Noah Siedman was a big brother to Ben who had Sanfilippo Syndrome, a devastating disease that leads to childhood dementia and premature death. He joins me to talk about his sibli…
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The Bespoke Gene Therapy Consortium, a public-private partnership backed by the Foundation for the National Institutes of Health, in February published its first playbook. The playbook provides a roadmap for streamlining product development and navigation of the regulatory pathway for AAV gene therapies with the goal of getting new treatments to pa…
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INNERSIGHT FREEDOM TURN NURSING HOMES INTO ACCESSIBLE
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INNERSIGHT FREEDOM TURN NURSING HOMES INTO ACCESSIBLE NURSING HOMES AREN’T HOMESBy INNERSIGHT FREEDOM
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FINALE! Stacy Ochoa Returns to Talk CPAP Alternatives for OSA in Adults
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Anyone with Obstructive Sleep Apnea (OSA) knows that CPAP is definitely not for everyone. In our Season 3 Finale, Stacy Ochoa, DDS, D-ABDSM,FICOI returns to discuss what sleep dentists can do to improve the airway of adults who cannot tolerate or do not want to use CPAP. Stacy started her journey in Dental Sleep Medicine 20 years ago when her Dad w…
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Who wouldn't love free food for your goats? But before you call your local brewer or distiller and ask if you can pick up their spent grain, listen to this episode with Dr. Robert VanSaun, vet professor and ruminant nutritionist at Pennsylvania State University. Spent brewers grain and distillers grain are popular feed for cattle, but are less comm…
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Welcome to this month's episode of Let’s Talk Rare: The Life Science Podcast brought to you by Partners4Access. Host Georgie records this episode at the World EPA Conference in Amsterdam. She holds a panel discussion with Juliette Sinclair-Spence, Sandrine Ruiz, Neil Grubert, and Seema Sondhi, and together we shared our experiences at the EPA confe…
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INNERSIGHT FREEDOM OPEN MIC NIGHT FRANK PERINO HOST SUZANNE SUZLADY INNERSIGHT MEANS FREEDOM ADVOCATES FOR THE DISABLEDBy INNERSIGHT FREEDOM
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[HIATUS] NOT EXPECTING: Fertility and Right To Family Planning (Episode Two)
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As an epilogue to the pilot episode of Not Expecting, Matthew welcomes Ann Scalia (Director, Clinical Education for Alliance RX Walgreens Pharmacy) and Ashley McClure-Wolfson (Manager or Clinical Program Development Walgreens) for an in-person roundtable conversation and recap discussion. What is "Right to Parenthood in 2024?" What's new in the wor…
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Episode 111 | Mathew Hall hits the wall with sarcoidosis. And it's Sarcoidosis Awareness Month!
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Episode 111 is a special episode of the FSR Sarc Fighter podcast. It's sarcoidosis awareness month -- and the folks who are fighting for us at FSR want to get the word out. So Angela O'Malley and Cathi Davis join me for the show to talk about how they are working behind the scenes to get people to "Say Sarcoidosis." But also on the show is fellow s…
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248 - Everyone Holds a Piece w/ FARA CEO, Jen Farmer
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In this insightful interview with Jen Farmer, CEO of the Friedreich's Ataxia Research Alliance (FARA), we explore the evolving landscape of rare disease research and the journey towards treatments for Friedreich's ataxia (FA). Jen shares her experiences and challenges as a leader in the field, emphasizing the importance of community involvement and…
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Guest: Dr. May Lee, Chief Physician at Nemours Children's Hospital Host: Dr. SteelmanBy PESTOLA
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117: An Interview With Ira Walker, the Muscular Dystrophy Association's 2024 National Ambassador, About Living With Spinal Muscular Atrophy
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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Ira Walker, the Muscular Dystrophy Association's 2024 National Ambassador, at the MDA's 2024 Clinical & Scientific Conference in Orlando, Florida. Walker, 39, has spinal muscular atrophy (SMA) type 2.By Rare Care Podcast
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On this episode of CoRDS Cast, Alyssa sits down with Becky from HODA (Hypertrophic Olivary Degeneration Association). Becky is an amazing advocate in the rare disease space as her sister is diagnosed with HOD. Tune in to listen to her story. To learn more information on HOD, please visit: hodassoc.org…
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MPR Weekly Dose 198 — Prescription App for MDD; Traumatic Brain Injury Blood Test; New Bloodstream Infection Antibiotic; Mpox Vaccine Availability; Left Ventricular Ejection Fraction Detection
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First prescription smartphone app approved for major depressive disorder; Novel blood test to detect TBI; Zevtera approved for bloodstream infections; Mpox vaccine is now commercially available; Algorithm cleared for LVEF dectection.
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