The Rare Possessions Podcast digs into the Scripture Central Library to find valuable works that focus on the Book of Mormon and other Restoration scripture.
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This is the real, raw, and all the feels of loving a child with disabilities. Episodes feature parent-guests, professionals, and solo episodes with host Madeline Cheney. Their authentic conversations don’t shy away from the strong and mixed emotions that often accompany medically-complex parenting. Parents listen in to feel seen, validated, and receive much-needed solidarity. Professionals working with disabled people listen in to better understand what is often going on under the surface fo ...
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A series of eclectic mixes from my vinyl record collection- check for regular updates and downloadable classics.
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The Culture's favorite podcast . Hosted by Rolo Rozay and Hake$y.
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General talking of jujitsu jokes movies , music health and mind set ,fitness normal chit chat also looking at my record collection and living in my local community chatting to friends and the wife at some point and anyone who drops in at my secret matted training area The Ninja Loft . .
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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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The Rare Disorder Podcast is a podcast created by Shivani Vyas, a high school senior, young changemaker, and rare disease advocate, dedicated to spreading awareness for rare diseases. This podcast is divided into 2 main series. In the "Meet a Fighter," Shivani interviews patients and those affected by rare diseases allowing them to share their inspirational stories. In "Meet An Expert/Partner," Shivani interviews public health experts, rare disease organization leaders, rare advocacy leaders ...
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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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Intended to build a community of creative female entrepreneurs, best friends and kindred spirits Abbi and Lydia cultivate space for candid conversations about pursuing dreams, owning businesses, balancing work and family life, and living out creative passions. You can expect vibrant, heartfelt, and authentic conversations between this vivacious duo and their occasional guests. We are all created to create and The Rare Collective podcast explores all that this truth entails.
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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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Rare Insights: Uncovering The Future Of Rare Disease Treatments
Know Rare (Taren Grom, Liz Kay, Kaitlyn Taylor, Nina Wachsman, and DNA Today’s Kira Dineen)
On “Rare Insights” we bridge the gap between those living with rare diseases and the biopharmaceutical industry. Know Rare amplifies the voices of individuals with rare conditions, providing invaluable perspectives to accelerate therapeutic solutions. Join us as we dive deep into the complexities of rare diseases, exploring real-world insights from passionate industry leaders. Together, we navigate the unknowns and unlock the potential for groundbreaking treatments. Because in this journey, ...
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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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South Jersey #1 One Man One Sound Podcast. New Episodes every 1st & 15th of the month
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A Good Nightmare Comes So Rarely: The Rise and Fall of Dance of the Vampires
Gibson DelGiudice, Maureen Skaggs, and Megan Lerseth
How did one of Europe's most popular and long-running musicals become one of the most infamous flops in Broadway history? Hosts Gibson DelGiudice (Hunter Arrogant Entertainment), Maureen Skaggs (Burdened with Glorious Podcast) and Megan Lerseth (Burdened with Glorious Podcast, NYC RHPS) take a deep dive into the whole gory story to get a look at the truth after decades of rumors and finger-pointing.
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Located in Los Angeles, Norman’s Rare Guitars is a retail store that offers a wide and often changing variety of new, used, and vintage guitars. It is a household name among top musicians and players worldwide. The allure of the store may start with the guitars, but to quote Norman's "nephew" Joe Bonamassa, "you don't buy a guitar, you buy a story." Join Norman and all of his buddies -- some of the world's best professional musicians and industry greats -- as they stop by to talk with Norm a ...
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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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Eric Borstein, who lives with pulmonary arterial hypertension, is walking from Los Angeles to San Diego to raise funds and awareness for the benefit of Team PHenomenal Hope. On September 21st, 2020, while at home, he collapsed from massive right heart failure and almost died. On September 22nd, 2024, four years after his PH diagnosis, he begin his …
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In The Case of an Unobserved Murder, John W. Welch uncovers a fascinating legal drama from Helaman 7-9. When Nephi prophesied that Seantum had killed his brother, he not only revealed the crime but predicted the very evidence that would convict him. Despite ancient laws requiring two witnesses, Seantum's spontaneous confession and the physical proo…
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165: What We Want Our Child’s Therapists to Know, But Don’t Tell Them w/ Alex Farha
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Have you ever wanted to tell your child’s therapist *exactly* how you feel about therapy homework? Or remind them just how many other therapy appointments you have scheduled this week. Or maybe just explain to them that... you want to be mom, not play the role of therapist today. In today’s episode, I’m joined with guest and fellow disability paren…
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#3 Transformative Cell and Exosome-Based Therapies with Capricor Therapeutics
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In this episode of "Rare Insights," host Taren Grom sits down with Dr. Linda Marbán, Chief Executive Officer at Capricor Therapeutics, to discuss groundbreaking advancements in the treatment of Duchenne muscular dystrophy and other rare diseases through innovative cell and exosome-based therapies. Dr. Marbán shares her journey in the biotechnology …
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In this episode, Thekla McGinley, a PAH patient and advocate, shares her journey with pulmonary arterial hypertension (PAH) and the changes she has witnessed in the treatment options and education for medical professionals. She emphasizes the importance of raising awareness and ensuring that patients have access to proper treatment. Thekla also dis…
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Purpose of the War Chapters in the Book of Mormon
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To read the chapter, go here: https://scripturecentral.org/archive/books/book-chapter/purpose-war-chapters-book-mormonThe "war chapters" in the Book of Mormon, particularly in the book of Alma, are less about military conflict and more about spiritual warfare and deliverance. They highlight how faith in God and righteousness lead to divine protecti…
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164: Jillian’s Story | Medical Mom x 2 and the Saying “Someone Always Has It Worse”
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Before we have children, most of us never envision what it would be like to raise a disabled child...and certainly not two of them with the same degenerative disease (Acid Sphingomyelinase Deficiency, ASMD for short, also sometimes called Niemann Pick Disease Type A/B). But this is the exact situation Jillian Arnold foundherself in after the birth …
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Dr. Morris Salem is a pediatric congenital cardiologist and adult congenital heart disease specialist at Kaiser Permanente in Southern California. He takes care of patients of all ages, from fetuses to elderly individuals. Dr. Salem's primary focus is interventional cardiac catheterization, specifically the closure of holes in the heart. He also de…
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Season 10 Kickoff | Episode Sneak Peaks, Newsletters + ISO a Final Board Member w/ Alyssa Nutile
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It’s time for Season 10! And once again, we’re coming back to the topic of our children’s disabilities and medical complexities. We have episodes on what we wish therapists knew, being a “crunchy” parent with medical complex children, some heart-wrenching story episodes, and a few *spicy* (and currently secret) episodes that’ll come out toward the …
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Episode 482 - Claire Champion, MSN, APRN, CPNP
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Claire Champion is a nurse practitioner at Texas Children's Hospital, specializing in pulmonary hypertension. As a nurse practitioner, she has the opportunity to see some of the patients as outpatients, which allows her to witness positive outcomes and the resilience of children. She also highlights the need for nurses to have a support system to c…
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Summer Mini #12: Adjusting to Disability Parenting as a Single Mom | Maddison’s Catch-Up
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It’s only been a year since we’ve heard from Maddison... but oh the things that can change in a year. Shortly after we initially recorded Maddison’s story, she and her husband separated. And the life that Maddison and her daughter knew before with a team of two parents working side by side and supporting each other, it just didn’t look the same any…
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In this episode, Dr. Charles Burger, the medical director of the Pulmonary Vascular Center at Mayo Clinic in Jacksonville, Florida, discusses the importance of patient registries, specifically the Pulmonary Hypertension Association’s PHA Registry (PHAR) for pulmonary hypertension. This registry collects clinical information and surveys from patient…
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Summer Mini #11: Family Planning Decisions + Changing Sibling Relationships | Madeline’s Catch-Up
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Three years ago, I shared two episodes about my ownfamily: one where I discussed how I discovered that I was a carrier for my son’s condition, and another where I talked about how much my older daughter struggled with accepting her brother. In the years since, we’ve navigated difficult decisions and agonizing choices, and now, for once, we feel som…
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In this episode, Dr. Dunbar Ivy, a pediatric cardiologist, discusses the value of repeat heart catheterization in patients with pulmonary hypertension. He highlights a recent study that compared the findings of the first and second heart catheterizations. The study showed that while the first heart catheterization is important for diagnosis and cho…
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Summer Mini #10: Finding a New Home + Starting Over | Tiffany’s Catch-Up
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When we last spoke to Tiffany, she was still trying to find something that felt like solid ground after going through a divorce right before the birth of her medically complex daughter. She and her two children were living in a trailer and trying to answer the question: What now? In this catch-up episode, Tiffany shares how much haschanged in these…
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Episode 479 - Claire Parker, MS, PNP, AC
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In this episode, Claire Parker, a pediatric nurse practitioner, discusses the results of a study that examined the prevalence of anxiety and depression among adolescents with pediatric pulmonary hypertension. The project aimed to incorporate mental health screening into the standard care for PH patients, similar to what is done for cystic fibrosis …
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#2 Using “Sea Squirts” to rewrite RNA with Ascidian Therapeutics
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In this episode of "Rare Insights," host Taren Grom speaks with Dr. Jay Barth, Chief Medical Officer at Ascidian Therapeutics, about groundbreaking advancements in RNA editing technology and its potential in the rare disease space. Dr. Barth discusses Ascidian’s innovative approach, inspired by “sea squirts,” and shares insights on the development …
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Summer Mini #9: Our Complicated Relationship with Medically Complex Facebook Groups
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You know that thing that you can’t seem to live without,but also don’t want to live with most of the time? That seems to describe the relationship most of us have with the medically complex and rare disease Facebook group community. In this episode, we’re sharing all your thoughts,feelings, and frustrations with these crucial, life-saving, and yet …
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Tina Proulx was diagnosed with pulmonary hypertension at the age of 19. She experienced difficulty breathing and chest pain, leading to a diagnosis of chronic thromboembolic pulmonary hypertension (CTEPH), a condition caused by blood clots in the lungs. Tina eventually underwent transplant and celebrated eight years post-transplant, surpassing the …
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Summer Mini #8: Rebuilding After Life-Changing Loss | Kari’s Catch-Up
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Kari was one of our very first guests almost four yearsago now. When we talked then, her daughter Sloan was still tiny, her husband was still alive, and the Covid-19 pandemic hadn’t happened yet. And now? Well, her entire world has changed in big and small ways. In this catch-up episode, Kari shares with us what it’sbeen like trying to relearn how …
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Marilyn Hanft, a CTEPH patient, shares her experience with the condition. In 2011, she initially mistook her symptoms for asthma but later discovered she had clots in her lungs. Despite her health challenges, she remains determined to live life to the fullest. Hanft discusses her love for sailing and her current plan for writing a book about her sa…
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Summer Mini #7: Everything You’ve Ever Wanted to Know About Madeline
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Each week, I share a new episode and guest, but Irealized that it’s been a long time since I’ve shared much of me, Madeline, with you. So today, I’m peeling back the curtain today and sharing all sorts of fun (and maybe a few not so fun) facts about me, my life, and my family. I’m sharing what motherhood looks like these days, traitsthat I do and d…
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Scott Fleetwood, a former pulmonary hypertension patient from Buffalo, New York, shares his journey with rare diseases. He initially experienced shortness of breath while playing hockey and was later diagnosed with pulmonary hypertension and scleroderma. Scott received a double lung transplant in 2017. He discusses the initial fear he felt upon lea…
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Summer Mini #6: The Oddly Specific Things We Grieve as Parents of Medically Complex Kids
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There’s plenty of grief that we expect as parents of medically complex kids... But what about those little pangs that seem to come out of nowhere? In this mini episode, we’re sharing the surprising and often oddly specific things we grieve as parents of medically complex children, from missing out on birthdays to struggling at beach trips. This is …
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Impact of Mergers, Acquisitions, and Patent Expirations on Job Cuts in Pharma and Biotech: Insights from Aurelija Luko and Darren Callanan
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Welcome to this month's episode of the P4A Let’s Talk Rare podcast by Partners4Acess. Today, Georgie and Owen are joined by their colleagues Aurelija Luko, the CFO, and Darren Callanan, the Global Digital Lead at Partners4Access. Join them as they discuss the recent job cuts in the pharma and biotech industry and the reasons behind them. Aurelia ex…
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In this episode, Dr. Robert Frantz, a cardiologist at the Mayo Clinic, discusses current and upcoming clinical research in pulmonary arterial hypertension (PAH). He emphasizes the low participation rate of PAH patients in clinical trials and encourages patients to consider participating, as it not only benefits themselves but also helps advance med…
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Summer Mini #5: Childhood Cancer + Changing Perspectives | Vanessa’s Catch-Up
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After learning to accept and manage her younger daughter’s disabilities, Vanessa thought she had a pretty good understanding of what it was like to raise a child with rare medical issues. But a diagnosis of childhood lymphoma for her older daughter turned all those notions upside down. In this short catch up with Vanessa, she’s sharing the way that…
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Amy Gietzen, a patient diagnosed with systemic scleroderma, shares her journey and experiences living with the disease. She discusses her initial symptoms, the shock of the diagnosis, and the lack of information and resources available at the time. Despite facing numerous challenges, including pulmonary fibrosis and pulmonary arterial hypertension,…
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#1 Sustaining A Rare Disease Pipeline with Rocket Pharma
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In this episode of "Rare Insights," host Taren Grom sits down with Dr. Kinnari Patel, President, Head of R&D and Chief Operating Officer for Rocket Pharma, to discuss the company’s burgeoning pipeline of rare disease assets and why applying data across its portfolio of potential treatments is just one key to the company’s success. Dr. Kinnari Patel…
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Summer Mini #4: Birthdays for Our Medically Complex Kids and the Many Emotions They Can Bring Up
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Birthdays, as we understand them societally, are a timefor celebrating, but it’s not so straightforward for all parents of medically complex kids. Birthdays can carry so much baggage, from feelings of isolationto reminders of difficult hospital stays to a resurgence of anticipatory grief. In this episode, we’re sharing all your thoughts and feeling…
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Episode 473 - Alvin Rocha MSN RN CPN PHN
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Alvin Rocha is a nurse care manager and pulmonary hypertension coordinator at Children's Hospital Los Angeles. He manages PH patients from birth to early adulthood. His main goal is to prepare these patients for the transition into the adult world. He is excited about the advancements in therapies and clinical trials and looks forward to attending …
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Summer Mini #3: A Close Call, Feelings of Regret + Embracing Second Chances | Suzi’s Catch-Up
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If you’re thinking about traveling with your disabled ormedically complex child this summer but you don’t know what you’ll need or how to plan, we’ve got your back! In this episode, we’re sharing the top ten things youneed to make traveling just a little easier and lighter. This quick episode will make your planning process so much easier. And for …
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“Rare Insights” is a podcast series interviewing industry and organizational leaders about the development of future therapies for rare diseases. On “Rare Insights” we bridge the gap between those living with rare diseases and the biopharmaceutical industry. Know Rare amplifies the voices of individuals with rare conditions, providing invaluable pe…
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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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Summer Mini #2: 10 Must-Haves for Traveling with Your Medically Complex Child This Summer
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If you’re thinking about traveling with your disabled ormedically complex child this summer but you don’t know what you’ll need or how to plan, we’ve got your back! In this episode, we’re sharing the top ten things youneed to make traveling just a little easier and lighter. This quick episode will make your planning process so much easier. And for …
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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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Summer Mini #1: What We Wish We Could Go Back and Tell Ourselves
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When we first start out in this rare life, it’s often terrifying. Everything is coming at us so fast, and sometimes you have to wonder: does it ever get better? Do things ever even out? It might feel impossible in those scary early days, but looking back, many of us have found a new perspective since then. Today, I’m sharing thoughts from this comm…
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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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162: Season 9 Finale | A Season of Growth, Listener Thoughts + Summer Mini-Episodes w/ Alyssa Nutile
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We’re finally rounding out Season 9, and whata season it’s been. The topic of this season was relationships, and perhaps as expected, the episodes this season were weighty, tender, and so touching. And besides the production of the podcast, we were busy coming into our own with some big milestones for The Rare Life as a nonprofit with grant submiss…
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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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161: Having a Nondisabled Child After Your Disabled Child + Conflicting Feelings That Brings w/ Brianna Alcox
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When you have a medically complex child, you probably have some realization that the experience you have with your child isn’t “typical.” But sometimes, it’s hard to understand just how different from the “norm” it was, until another child comes along – particularly one without disabilities or medical complexities. In this episode, Brianna, a mom o…
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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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160: Ashley Smith’s Story | Sibling Dynamics, Nontraditional Gender Roles, + Not Knowing What to Grieve
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After Ashley Smith’s son Deacon was admitted to the NICU, and one thing after another cascaded out of control with his care, she found herself literally screaming in the nursery “THIS IS NOT MY PLAN!” While not all of us have screamed this out loud, so many of us have had a similar breaking point, where the weight of fear and grief and lost expecta…
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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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The Role of Patient Experience Data in Drug Development with Pina Haberl and Sam Morrison
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Welcome to this month's episode of the P4A Let’s Talk Rare podcast by Partners4Acess. Today, Georgie and Owen are joined by their colleagues Pina Haberl, Senior Director, and Sam Morrison, Executive Director at Partners4Access. Join us as we discuss the crucial role of patient experience data in drug development. The conversation explores the need …
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159: Sharing the Mental Load with Your Partner in Disability Parenting w/ Amanda Griffith-Atkins + Will Atkins
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Nothing breeds resentment faster than one member of a romantic partnership feeling like they're pulling all the weight in one area of life. And when it comes to the parents of medically complex kids, that resentment can compound even faster, especially as the mental load of navigating medical care often falls onto one partner. (Let’s be real: it’s …
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Karen Martinez, a mother from Eastvale, California, shares her experience with Camp del Corazon, a camp for children with congenital heart defects and lung disease. Her daughter attended camp for the first time at the age of seven and has been going every summer since. The camp offers events throughout the year and fosters lifelong connections amon…
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158: Serena’s Story | Disability Advocate Turned Disability Parent, a Degenerative Diagnosis, + the Power of Now
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Before she had her son, Serena was already a pediatric SLP, business owner, and disability advocate who spent her time empowering families to understand and become more comfortable with their children’s disabilities. So, she was prepared for anything, or so she thought. But as it turns out, no amount of education or experience can prepare you for t…
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Gina Mundy is an attorney specializing in childbirth cases. For over 20 years, her focus has been investigating and analyzing mistakes that arise during labor and delivery. She has spent countless hours meticulously scrutinizing childbirth cases, conducting interviews with delivery teams, and thoroughly examining medical records to understand every…
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In this episode, Joellen Brown shares her experience with pulmonary hypertension (PH) on the 15th anniversary of her diagnosis. Joellen was born with a hole in her heart and had her first open heart surgery at the age of two and a half. She believes she may have had PH since birth, but was not aware of it due to limited research in the 1950s. Joell…
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