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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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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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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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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
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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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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 ...
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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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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!
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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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"Occult Awareness" is a transformative podcast dedicated to shining a light on the often misunderstood realm of hidden or 'occult' medical conditions. The podcast serves as a beacon of hope and knowledge for individuals navigating the complexities of rare and difficult-to-diagnose conditions, such as Occult Tethered Cord and Cervical Cranial Instability (CCI) within the Ehlers-Danlos Syndrome (EDS) population.Each episode invites listeners into the lives of those who face the daily challenge ...
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The goal of our “Ask the Expert” podcast series is to share the latest research and information on rare neuroimmune disorders and provide an avenue for individuals diagnosed with these disorders and their family members to ask questions to experts who specialize in these disorders. The podcasts are moderated based on questions submitted by our community. We would like to hear from you. If there are topics that you would like us to address in our podcasts, you can share your thoughts by sendi ...
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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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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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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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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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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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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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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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Freddi Greenmantle - Quiet Words from a Loud Mouth.
Freddi Greenmantle - Quiet Words from a Loud Mouth.
I am a 72 yr old, female, single parent, retired primary schoolteacher of more than thirty yrs experience. I have also taught abroad, (Caribbean island) and I still tutor ESOL. I am passionately committed to improving older people’s lives, having lived in a “sheltered/independent living” Housing Ass. retirement property for 13 years since becoming disabled through an accident in 2006. I have been working for 13 yrs in the local community as a local Whalley Range forum member, and secretary t ...
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Welcome to Conversations in Drug Development, brought to you by the team at Boyds for our fellow community of scientists and clinicians working in the wonderful world of cell and gene therapy and drug development. This podcast series features candid conversations from the expert team at Boyds, who are at the forefront of cutting-edge science and drug development in the pharmaceutical and biotechnology sector.
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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.
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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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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 ...
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Autoimmune Community Voices podcast features conversations with the diverse autoimmune community. This is a podcast of the Autoimmune Community Institute - acicommunity.org
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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 ...
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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.
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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 ...
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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 ...
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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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LAUNCHING SPRING 2024 --------------- 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, treat ...
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Beyond Medicine is a healthcare community podcast focused on exploring the cutting edge of science & medicine, & learning from todays leaders. Our host, Dr. Rami Wehbi is a Physician interested in innovation, science and solving the most pressing issues in healthcare.
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"🎙️ 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. 🎤 ...
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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 ...
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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.
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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.
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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.
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DNA Dialogues: Conversations in Genetic Counseling Research
Journal of Genetic Counseling (Jehannine Austin, Naomi Wagner, Khalida Liaquat, Kate Wilson and DNA Today’s Kira Dineen)
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 ...
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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.
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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 ...
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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. ...
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Patrick sits down with Thomas Bartlett, Myasthenia Gravis patient and advocate, about the unique struggles of living with an invisible chronic disorder. Also, we all know if you want real answers — ask a nurse. We’ve got Andrea Buxton, Nurse Practitioner at the Hemophilia Outreach Center in Green Bay, WI, with her account of the first commercial do…
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Best of the 2023 Nano-rare Patient Colloquium
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We’re recapping the 2023 Nano-rare Patient Colloquium in this special “Best of” episode. For the Colloquium, we gathered the nano-rare community under one single roof for a full day of presentations and panels with experts, partners, supporters, and patients. So, we are bringing some of the top moments directly to your speakers. Discover the origin…
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New Insight: A Look at the OcuLenz with Michael Freeman, CEO of Ocutrx
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Since the mid-20th century ushered in the ‘Information Age’, a desire for innovation has driven the pursuit of technological advancements. Many may immediately consider the transformations personal computers and smartphones have had on modern society, but these advancements have transformed the fields of medicine time and time again. In the latest …
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Understanding Genetic Counseling - Essential Insights for Parents – Navigating Appointments, Referrals, Testing, and Insurance with Expert Abby Turnwald MS CGC
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ONCE UPON A GENE - EPISODE 232 Understanding Genetic Counseling - Essential Insights for Parents – Navigating Appointments, Referrals, Testing, and Insurance with Expert Abby Turnwald MS CGC Abby Turnwald is a genetic counselor here to talk about genetic testing and the crucial role genetic counselors play in guiding families through the complexity…
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126: An Interview With Pamela Gavin, New CEO of the National Organization for Rare Disorders (NORD)
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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Pamela Gavin, the newly appointed CEO of the National Organization for Rare Disorders (NORD).By Rare Care Podcast
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In this episode, Dr. Dunbar Ivy, a pediatric cardiologist at the University of Colorado, discusses the upcoming World Symposium on Pulmonary Hypertension, where experts from around the world will gather to discuss the progress made and future directions. Dr. Ivy highlights the work of the pediatric pulmonary hypertension task force, which aims to d…
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I entered self-therapy in 2023, after 23 years of taking an anti-depressant sedative, commonly prescribed, called citalopram. I heartily recommend you don't . SP is an ongoing process, it is not only fascinating and magical, it is also amazing, liberating and wonderful. I thank Richard Shwartz for the therapy called IFS, Internal Family System, and…
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The Power of Genetic Diagnosis - More Than Just a Label
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By Effie Parks
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[LOST EPISODE] Healthcare Reporter Hero Jonah Comstock
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Jonah Comstock is the Editor in Chief of pharmaphorum and a veteran healthcare journalist and reporter. He's been covering this topic even before this topic was a thing to be covered. Throughout his career, he has helped to shape significant narratives about the sector, what matters today, and where he sees progress in the future. Learning from his…
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125: An Interview With Patricia Weltin, Founder and CEO of Beyond The Diagnosis
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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Patricia Weltin,founder and CEO of Beyond the Diagnosis—a nonprofit that uses art to raise public awareness of children with ultra-rare diseases.By Rare Care Podcast
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Nola Martin shares her experience with pulmonary arterial hypertension (PAH). Nola describes the physical and mental challenges she faced, including fatigue, weight gain, and the need to ask for help. Nola emphasizes the importance of self-advocacy and fighting for one's own health. She recounts a situation where she had to push her doctor to liste…
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The Most Essential Tips for Biotechs Seeking Investment
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Welcome to a special edition of Conversations in Drug Development, brought to you by the team at Boyds. In this episode, our host Harriet Edwards hands over the mic to two of her colleagues to discuss a critical topic for early-stage biotech companies: funding challenges and how to overcome them. Dr Nick Myers and Dr Neil Fish, share their extensiv…
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Dr. Michael Levy joined Dr. GG deFiebre of SRNA for the “Ask the Expert” podcast episode titled "What is ULTOMIRIS?" Dr. Levy explained that ravulizumab (ULTOMIRIS) is the newest FDA-approved medication for neuromyelitis optica spectrum disorder (NMOSD), offering a longer dosing interval compared to eculizumab (Soliris) [00:01:08]. Dr. Levy discuss…
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Helping Rare Parents Help Themselves, feat. Ronda Thorington, LPC
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In this episode of the podcast we sit down with Ronda Thorington, the mother of child living with mixed connective tissue disease. Ronda is also a licensed professional counselor who specializes in empowering parents of children who are living with a rare or chronic diagnosis. Connect with Ronda: Website - Facebook - Instagram Editor's Note: Chroni…
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125: An Interview With Sarah Glass, PhD, of the n-Lorem Foundation
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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Sarah Glass, PhD, chief operating officer of the n-Lorem Foundation—and the mother of a boy with an ultra-rare disease.By Rare Care Podcast
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#4 Discussing Gender Inclusive Terminology and Gender-Affirming Hereditary Cancer Care
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In our fourth episode, we delve into the importance of gender-inclusive language in genetic counseling and the specific challenges transgender and gender-diverse (TGD) individuals face in accessing hereditary cancer care. You can find these articles in a special virtual issue of the Journal of Genetic Counseling which is free and open access for th…
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The Hurdles of Insuring Patients with Nano-rare Mutations with Alan Lotvin, M.D.
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What's preventing insurers from covering the specialized care of patients with nano-rare mutations, thereby expanding access to available treatment options? Is it the population size, cost, or perceived risk? Given that the initial discovery of nano-rare mutations is relatively recent, paving the way for this population requires a nuanced approach …
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124: An Interview with Dimitrios Karussis, MD, PhD, on Stem Cell Therapy for Multiple Sclerosis
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By Rare Care Podcast
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[LOST EPISODE] Unexpected Consequences of the Roe v Wade Decision
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In today's special bonus episode, Matthew welcomes fellow podcaster and leading Women's Health physician Dr. Mitzi Krockover to the hot seat. Mitzi is the Founding Medical Director of the Iris Cantor UCLA Women's Health Center, a storied entrepreneur, and a thought leader in her sector. She has created a community—nee, a movement—called Beyond The …
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In this episode, Dr. Eric Austin, a pediatric pulmonologist and pulmonary hypertension doctor, discusses the upcoming World Symposium on Pulmonary Hypertension, which will focus on various aspects of pulmonary hypertension research and clinical care. Dr. Austin is part of the task force on genetics and genomics, which aims to explore the genetic la…
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The Unsung Heroes: Siblings Caring for Loved Ones with Rare Diseases
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I Care for Rare is a podcast for parents and families of people living with rare diseases. It’s co-hosted by Sherrilynne Starkie and Sandra Markus, the visionary behind the I Care for Rare campaign and its mission to create a collective voice for individuals, families, and caregivers living with rare diseases, inspired by her experience caring for …
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Mild hemophilia truly does matter and we’re with Shellye Horowitz, formally with HFA, to hear about HFA’s Mild Matters program. Plus the final Elite Athletes segment with Paul McLaughlin and I’m Fine with Luke Pembroke. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. I’m Fine and…
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Balancing Rare Disease Advocacy and Family - Navigating the Complexities and Embracing Imperfections with Nikki Stusick
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ONCE UPON A GENE - EPISODE 230 Balancing Rare Disease Advocacy and Family - Navigating the Complexities and Embracing Imperfections with Nikki Stusick Nikki Stusick is the mom of a child with an initial VUS diagnosis and then a different pathogenic diagnosis. We talk about the complexities of balancing advocacy work, family life, when to choose one…
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Unveiling the Unseen Part 1: Aella's Fight for Diagnosis Amidst Medical Gaslighting
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In this gripping episode of Occult Awareness, Aella Askew bravely shares her harrowing journey through a maze of undiagnosed chronic illnesses and medical gaslighting. From a childhood filled with pain and dismissed symptoms to a life-altering spine injury, Aella's resilience shines through as she fights for answers and validation. Join us as we de…
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The Use of ATMPs in Oncology Clinical Trials
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How can phase I studies with ATMPs address unmet needs in oncology and what are the challenges? In this episode of Conversations in Drug Development, Dr Katherine Bowen is joined by Pharmaceutical Physician, Dr Harriet Gray Stephens, to delve into the complexities of phase I oncology studies involving advanced therapy medicinal products (ATMPs). Jo…
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In this episode, Redeat Workneh leads a discussion focusing on navigating barriers between clinicians and patients in Ethiopia.By Children's Mercy - Pediatric Ethics
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[HIATUS] CAREGIVER LIFEHACKS (CLL) "To Google or Not To Google" (Episode Three)
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More than 53 million Americans act as family caregivers who often fall below the radar sacrificing everything in the name of compassion, empathy, and love. Caregiver Lifehacks amplifies the voices of those impacted by the diagnosis of a loved one. Hungry to connect and share information, these authentically candid interviews give us a peek into the…
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IPF and the Importance of Clinical Trials, feat. Patient Advocate Murray Walz
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In this episode of the podcast we sit down with Murray Walz, a patient advocate who was diagnosed with the progressive lung diseases idiopathic pulmonary fibrosis (IPF) in 2019. Murray discusses the importance of support, clinical trials and why the family factor is crucial for IPF patients. Connect with the Canadian Pulmonary Fibrosis Foundation: …
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Victoria McKinnon shares her personal experience with pulmonary hypertension, specifically her son Owen’s eight week battle with the condition. Owen was diagnosed with alveolar capillary dysplasia (ACD), a genetic disease that causes pulmonary hypertension. Despite initial improvements, they ran out of treatment options and ultimately had to make t…
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123: An Interview With Mary Morlino, Patient Navigator at the Undiagnosed Diseases Network Foundation
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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Mary Morlino, who has sarcoidosis and is the patient navigator for the Undiagnosed Diseases Network Foundation.By Rare Care Podcast
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Uniting Strengths - Rare Disease Collaboration on a Shared Patient Registry Through Sanford Cords with Cure Mito and Hope for PDCD Leaders Frances Muenzer Pimentel and Sophia Zilber
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ONCE UPON A GENE - EPISODE 229 Uniting Strengths - Rare Disease Collaboration on a Shared Patient Registry Through Sanford Cords with Cure Mito and Hope for PDCD Leaders Frances Muenzer Pimentel and Sophia Zilber Frances Muenzer Pimentel and Sophia Zilber have united the Hope for PDCD Foundation and the Cure Mito Foundation to launch a global joint…
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Anna's Story of Hope and Help: FUS-ALS with Sonja Kämpfer and Dr. Neil Shneider
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Stan Crooke speaks with Sonja Kampfer and Dr. Neil Shneider, associate professor of motor neuron disorders at Columbia Medical School, about Sonja’s daughter, Anna. Anna was diagnosed with an aggressive, fatal form of ALS at the age of 16. ALS is rare in teenagers, and this form of ALS is the worst of the worst. Sonja tells Anna’s story initial sym…
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[HIATUS] CAREGIVER LIFEHACKS (CLL) "In Sickness and In Health" (Episode Two)
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More than 53 million Americans act as family caregivers who often fall below the radar sacrificing everything in the name of compassion, empathy, and love. Caregiver Lifehacks amplifies the voices of those impacted by the diagnosis of a loved one. Hungry to connect and share information, these authentically candid interviews give us a peek into the…
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Haley (aka @Wolf Haley), who was diagnosed with pulmonary hypertension (PH) at 18 years old, shares her journey with the disease and how she has found healing and purpose through art and advocacy. Haley discovered her passion for art as a form of therapy, using watercolor to express her thoughts and emotions about living with PH. Haley also works a…
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UK Blood Inquiry Clive Smith & Laurence Woollard
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Our blood brother buds, Clive Smith & Laurence Woollard join us today to share the latest from the ongoing saga of UK Blood Inquiry, plus our latest Gene Therapy segment has Mason Buxton’s story (the first hemophilia B patient to be commercially dosed with gene therapy!). Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, vi…
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Episode 228 - Strength In Unity - The Power of Consolidated Rare Disease Advocacy, Collaborative Breakthroughs, and the Every Cure Initiative with Dr. David Fajgenbaum
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ONCE UPON A GENE - EPISODE 228 Strength In Unity - The Power of Consolidated Rare Disease Advocacy, Collaborative Breathroughs, and the Every Cure Initiative with Dr. David Fajgenbaum Dr. David Fajgenbaum is is a groundbreaking physician-scientist, disease hunter, speaker, and national bestselling author of Chasing My Cure: A Doctor's Race to Turn …
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122: An Interview WIth Tracy Sharp, a Patient With Lambert-Eaton Myasthenic Syndrome
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By Rare Care Podcast
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[HIATUS] CAREGIVER LIFEHACKS (CLL) "Find Your People" (Episode One)
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More than 53 million Americans act as family caregivers who often fall below the radar sacrificing everything in the name of compassion, empathy, and love. Caregiver Lifehacks amplifies the voices of those impacted by the diagnosis of a loved one. Hungry to connect and share information, these authentically candid interviews give us a peek into the…
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Dr. Jason Weatherald, a pulmonologist at the University of Alberta, discusses a study on the socioeconomic burden of pulmonary arterial hypertension (PAH) in Canada. The study, conducted through PHA Canada, surveyed PAH patients and their caregivers to understand how the disease affects their ability to work and perform daily activities. The result…
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Finding the Joy in Life: Marika’s Journey with Loeys-Dietz Syndrome & ”Occult” Paralysis
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Send us a Text Message. Marika emphasizes the importance of grieving and finding joy in daily life despite the difficulties. The hope is that the conversation will help others feel less alone and inspire better care in the medical field. In this episode of the "Occult Awareness" podcast, host Amy Wang-Hiller interviews Marika, who shares her journe…
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Here’s how the University of Utah will showcase using AI responsibly
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The University of Utah has long been at the center of revolutions in technology, from development of the internet to innovations in graphic computing. Now the U is poised to take the same leading role with artificial intelligence. In this episode of U Rising, host Chris Nelson talks to Professor Manish Parashar, who is overseeing the university's R…
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1208. MOGcast - Understanding Cortical Encephalitis
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This “MOGcast” edition of the “Ask the Expert” podcast series is a collaborative episode titled, “MOGcast 2: Understanding Cortical Encephalitis.” Dr. Eoin Flanagan and Dr. Cristina Valencia Sanchez joined Julia Lefelar of The MOG Project and Dr. GG deFiebre of SRNA to discuss cortical encephalitis, its symptoms, and the connection to MOG antibody …
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121: An Interview With University of Pennsylvania Neurologist and CIDP Expert Chafic Karam, MD
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Navigating the Currents: Interferons in the Treatment of Polycythemia Vera
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On this special episode of the BloodStream Podcast, we explore interferons in the treatment of polycythemia vera (or PV). This episode is brought to you by PharmaEssentia. If you’d like to learn more about polycythemia vera, check out our sister show PV Pod: Stories from the Marrow (brought to you by BloodStream Media and PharmaEssentia). Connect w…
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Powering Through Adversity: Personal Trainer Shaun Kehoe’s Journey from Brain Surgery to Fitness Advocate
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The I Care for Rare podcast reveals the challenges faced by the families caring for people who have a rare health condition, In this episode we delve into the challenging world of rare diseases with Sandra Markus, founder of iCare4Rare, and Shaun Kehoe, a certified personal trainer with a remarkable journey of his own. Zach, Sandra’s adult son with…
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Navigating the Maze of Rare Conditions: Why Sharing Our Stories Matters
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Send us a Text Message. In this deeply personal episode, join Amy as she shares her harrowing journey through a labyrinth of medical mysteries that span years of misdiagnoses and ineffective treatments. From the initial shocking symptoms following a float tank session to the life-altering diagnosis of Ehlers-Danlos Syndrome and related complication…
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Transforming LEMS Challenges into Courage
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On this episode of the LEMS Aware podcast, we are joined by Patrick, who shares his challenging journey to receiving a LEMS diagnosis. As someone dedicated to serving others through work and church, Patrick struggled with suddenly needing to rely on others for help. His diagnosis process forced him to take significant time off, burning through his …
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On this episode of the LEMS Aware podcast, we are joined by Karyn. Karyn first started feeling her symptoms of LEMS 24 years ago, but wasn’t diagnosed until 2013. Living with her disease for almost 12 years before receiving her diagnosis helped her adapt to life in new ways, become more comfortable in her condition and gave her time to accept that …
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Mostyn's Story: Mother's Day Special with Zoe Hummel
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Motherhood is a journey filled with challenges, but every step is worth it for the love and joy it brings. Zoe Hummel joins the show in this special Mother’s Day episode to discuss her son Mostyn’s emotional story to diagnosis, and the unique challenges and triumphs of being a nano-rare mom. Order your Mother's Day card by May 6, 2024! All proceed …
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[HIATUS] THE SICKLE: Fighting Medical Disparities with Sickle Cell Disease (Episode Three)
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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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