Rare Disease Advisor's Rare Care Podcast features exclusive interviews with experts and stakeholders from the rare disease community.

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.

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 ...

Imagine the excitement of becoming a new parent and then within hours finding out your child has a serious developmental disorder. That is exactly where Sanath Kumar Ramesh found himself in the summer of 2018. One year later, on his son’s first birthday, they found out that their son, Raghav, had an extremely rare mutation of the GPX4 gene. At the time, doctors told them that Raghav may be the only one on the planet with this genetic variant who had lived beyond one month of life. The progno ...

I'm Aware That I'm Rare: the phaware® podcast is devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because ea ...

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.

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 ...

Your destination feed for medical, health care and clinical science podcasts courtesy of HCPLive—featuring our shows DocTalk, Rare Disease Report, Heart Team, Overdrive, and Derm Discussions. Music Courtesy of BenSound

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 ...

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 ...

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.

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.

Join us for a one-hour rare disease community support group. Here we will discuss the topics that affect your daily life in rare diseases as well as special needs. Being a parent is hard but having a child in rare disease takes a special kind of person and the journey is filled with potholes along the way. The pathway may never be clear, but together we can navigate by supporting each other. P.S. we are not a glum lot!

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.

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 ...

WeHaveAFace.org Inc. has created "WeHaveAVoice" Radio for the Huntington's and Juvenile Huntington's disease community. It is time for the community to speak out...speak up! We must openly share what all of us in the Huntington's community experience on a daily basis! Removing the stigmas and broadening social awareness and acceptance is paramount! Visit: www.WeHaveAFace.org/Radio for more information.

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 ...

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.

This new podcast from the Pulmonary Hypertension Association (PHA UK) is the ideal listen for anyone living with the rare disease PH. It builds on the chatty style of our member magazine, EmPHAsis, to bring listeners news, conversations, advice, analysis and more. Our podcast isn’t just for patients; it’s for everyone in the PH community - friends, family, carers, and medical professionals too. You’re all welcome here :-) Listen to EmPHAsis On Air when you’re driving, walking, resting, or if ...

The Mighty Podcast infuses the health space with positivity, humor, and vulnerability. Explore topics on mental health, chronic illness, rare disease, disability, and more. Continue the conversation with a community who gets it on TheMighty.com.

Autoimmune Community Voices podcast features conversations with the diverse autoimmune community. This is a podcast of the Autoimmune Community Institute - acicommunity.org

360 with Katie Woolf, weekdays 9:00am to 12:00pm

Podcast by Managed Care Cast

A domestic terrorist attack evokes a violent and oppressive response from the U.S. government... a labor dispute ends in violence... a young boy lies dying of a rare disease with no hope in sight. When the conflict focuses on a small town in West Virginia, Ken Murphy, Iraq veteran and Lieutenant Colonel in the West Virginia National Guard, must find a way to protect his family and community in a world turned upside down. In a future America terrifying to behold, Republic evokes the specter o ...

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.

Welcome to Fempower Health—where empowering women through every stage of life isn't just our mission; it's our passion. Fempower Health is a beacon for women navigating the complex world of healthcare, providing a supportive platform where your voice is heard and your concerns are addressed with the compassion and understanding you deserve. Our podcast, a central hub for empowering information, is dedicated to women who find themselves on an exhausting quest for answers to their health quest ...

Welcome to the dys-FUNCTIONAL podcast, where we discuss ways to function with Dysautonomia! Dysautonomia is an umbrella term for a bunch of different conditions that all cause your automatic body functions such as breathing, heart rate, blood pressure, digestion and so on to not work correctly. Here, we bring doctors, practitioners, caregivers, autonomic experts, and Dysautonomia warriors to the mic to discuss tips, strategies, the latest research, treatments, real-life stories and answers t ...

CMT 4 Me is an emotional, heartfelt, and humorous podcast for the 3+ million people who have CMT (Charcot-Marie-Tooth disease), their friends, family, and the general public. CMT 4 Me provides a platform for people with CMT to have a voice, describe challenges, find ways to overcome those challenges, and share successes. Another goal is to spread CMT awareness and unite as a community. We will also cover research updates, fundraising, unique stories, interviews with the CMTA community, inclu ...

What about PS? Hosted by Giselle Barbosa, PIP-UK Ambassador, Entrepreneur and Athlete. The What about PS? podcast aims to shine a light on Poland Syndrome, a rare disease, and the lived experience of the Poland Syndrome community. Each episode, Giselle will explore inclusive and varied experiences of people living with Poland Syndrome with a variety of guests, from Paralympian Kim Daybell, Former Cricketer Lewis Hatchett, Australian Gymnast Clay Mason Stephens to medical professionals, bra c ...

"🎙️ Welcome to EMPOWER360 by PGDI - Amplifying Impactful Change! 🌍✨ We're excited to introduce our brand-new signature tune! 🎶 Join us on a journey of empowerment, transformation, and positive change. 🚀 In this captivating tune, we set the stage for thought-provoking discussions, inspiring stories, and engaging dialogues with change-makers from around the world. 🗣️💡 Our hosts, Theo Ekah and Isaac Salami, are here to take you on an incredible ride of knowledge, empowerment, and inspiration. 🎤 ...

The Brain Coach podcast is hosted by executive function expert and 'Brain Coach' Mary Turos. Take a deep dive into executive functions and simple strategies based in neuroscience to overcome obstacles and achieve personal progress. Each episode provides insights from a community of educators, researchers, therapists, clinicians, family members to support a healthy brain.

A podcast for people with Axial Spondyloarthritis. I am Jayson Sacco, a 34 year plus Axial Spondyloarthritis survivor. With this show, I want to bring the AS community together and talk with doctors, organizations, and individuals all dealing with AS.

In DNA Dialogues we dive into the intricate world of genetic counseling research. Join us as we peel back the layers of groundbreaking articles from the Journal of Genetic Counseling, bringing you exclusive discussions with the authors themselves. Each episode sparks a vibrant exchange, exploring the latest discoveries, ethical dilemmas, and technological advances that are shaping the future of medical genetics. From navigating complex testing decisions to building trust with diverse communi ...

SciPodChat is an engaging podcast led by experienced Oncology scientist Dr Biswajit Podder that aims to uncover the mysteries of science in a digestible way for all ages, making complicated ideas friendly and pleasant. Listeners are taken on an enlightening journey exploring the wonders of the universe, the intricacies of the human body, and the cutting-edge technologies shaping our future through weekly episodes featuring conversations with experts from diverse fields, all while fostering a ...

This podcast features people with chronic health conditions as they share their positive coping tools and practitioners of mind-body and/or alternative health who have helped people with a chronic health condition.

Join me for podcasting fun! Want to know what I'm watching, listen to my Midnight Binges segment where I watch the newest shows. Looking for something new, look no further than our Under the Radar segment. Spotlight Artist places a light on artists regardless of the art they're into. Flashback Friday is just that, some nostalgia goodness. Is reading more your speed, we have a segment for that too. Our Currently Reading podcast might be your thing. Utter Randomness is just that, a segment abo ...

Pediatric Ethics Podcast is a monthly podcast from the Children’s Mercy Bioethics Center in Kansas City. This free podcast series for pediatric health care professionals features leading pediatric ethicists discussing timely topics in pediatric ethics.

At the University of Utah, we have a saying: Imagine, then do. On U Rising, you’ll hear stories from our faculty, staff and students that bring those words to life. We'll share inspiring, innovative and impactful initiatives that are benefitting our community and the world. U Rising is hosted by Chris Nelson and Julie Kiefer. Chris, who has more than 26 years of experience in higher education and academic health care, is the chief university relations officer and secretary to the university. ...