The Rare publiczne
[search 0]
Więcej
Download the App!
show episodes
 
Artwork

1
The Rare Life

Madeline Cheney

Unsubscribe
Unsubscribe
Co tydzień
 
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 ...
  continue reading
 
Artwork
 
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 . .
  continue reading
 
Artwork

1
Rare in Common: the podcast

Cambridge BioMarketing

Unsubscribe
Unsubscribe
Miesięcznie
 
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.
  continue reading
 
Artwork
 
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 ...
  continue reading
 
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!
  continue reading
 
Artwork

1
The Rare Collective

Lydia Ryals & Abbi Phillips

Unsubscribe
Unsubscribe
Miesięcznie
 
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.
  continue reading
 
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
  continue reading
 
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 ...
  continue reading
 
Artwork

1
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)

Unsubscribe
Unsubscribe
Miesięcznie
 
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, ...
  continue reading
 
Artwork

1
Norman's Rare Guitars, The Podcast

Norman's Rare Guitars

Unsubscribe
Unsubscribe
Miesięcznie
 
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 ...
  continue reading
 
Artwork
 
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.
  continue reading
 
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 ...
  continue reading
 
Loading …
show series
 
Nikole’s delivery for her daughter Chloe was... less than ideal for quite a few reasons. Nikole’s health was in jeopardy, Chloe was delivered nearly two months early, and according to one especially rude NICU doctor, Chloe “looked funny.” This difficult experience reached a crescendo when Nikole was given the news of Chloe’s rare diagnosis, Wolf Hi…
  continue reading
 
Sarah Stone shares the story of her family's journey with rare medical conditions in North Central Minnesota. Sarah's life took a turn when her daughter began showing unusual symptoms, eventually diagnosed with pulmonary hypertension, a rare condition complicated by her family's genetic predisposition to HHT. As their medical challenges unfolded wi…
  continue reading
 
To read the article, go here: https://scripturecentral.org/archive/books/book-chapter/the-sermonatthetempleThis article presents a fresh perspective on Jesus' Sermon on the Mount by exploring its parallels in the Book of Mormon, specifically in 3 Nephi 11-18, which it calls the "Sermon at the Temple." It suggests that the Sermon is best understood …
  continue reading
 
In this episode of P4A Let's Talk Rare, hosts Georgie and Owen Bryant from Partners For Access are joined by Wes Michael, founder and president of Rare Patient Voice LLC. Wes shares the organization’s journey from its beginnings as a community project for hemophilia patients to a global platform that connects rare disease patients and caregivers wi…
  continue reading
 
In this episode of "Rare Insights," host Taren Grom speaks with Dr. Joanne Donovah, Chief Medical Officer at Edgewise Therapeutics, about groundbreaking advancements for severe, rare muscle disorders. Dr. Donovan shares why Edgewise’s approach to targeting the basic unit of muscle contraction and being able to preserve and protect muscle function c…
  continue reading
 
It’s no secret that parenthood is expensive. But when it comes to parenting a medically complex kid, the dial is turned up to 100. Everything with an “accessible” label is marked up 10x. We have to make renovations to our homes and vehicles with little to no financial assistance. And that’s often on top of career and work changes that have made our…
  continue reading
 
Maria Morias, a registered nurse from Canada, shares her journey of managing multiple autoimmune diseases, including her recent diagnosis of pulmonary arterial hypertension. Previously dealing with scleroderma, Raynaud's phenomenon, and a rare liver disease leading to a liver transplant, Maria's ongoing symptoms of shortness of breath were eventual…
  continue reading
 
There are few things as intense as an inpatient stay with your child. The pressure is on, the anxiety is at an all-time high, and the hypervigilance is ever present. And honestly? It doesn’t even matter if it’s a planned observation or an emergency situation, it’s still so stressful. In this episode, I talk through the whole experience of hospital …
  continue reading
 
In this episode, David Lake a retired jet pilot, discusses his experience with pulmonary arterial hypertension, initially misdiagnosed as exercise-induced asthma. Lake also manages hemophilia, COPD, and irregular heartbeats, impacting his health significantly. Despite these challenges, he remains hopeful and active in his community and church. His …
  continue reading
 
Imagine with us: You have a shelf full of tinctures, a book of natural remedies, and plan to use holistic medicine to care for your family as much as possible... and then you have a medically complex child who requires intense medical intervention, specialist appointments, and a whole host of pharmaceuticals. This is where Suzi Boubion and Julianna…
  continue reading
 
Lori Myers, shares her experience living with VSD and Tetralogy of Fallot, which caused her to be born as a "blue baby" and have various health issues throughout her life. After multiple surgeries and diagnoses, she was eventually told she had pulmonary arterial hypertension (PAH). Despite the prognosis, Lori is now in her tenth year since the diag…
  continue reading
 
To read this chapter, go here: https://scripturecentral.org/archive/books/book-chapter/thieves-androbbersIn ancient Near Eastern law, there was a big difference between a thief and a robber: thieves were locals dealt with by the courts, while robbers were dangerous outsiders handled militarily, often executed on the spot. This distinction is key in…
  continue reading
 
Stephanie’s family had big plans before her son Garrett was born. A business idea, a roadmap laid out, and the world felt wide open before them. And then... things changed. Garrett was born with a (still undiagnosed) medical complexity that requires intense, round-the-clock care. Trauma ensued. Tears were shed. And tough decisions were made, as Ste…
  continue reading
 
PAH patient and Chicago-area support group leader, Sue Liss, discusses her pulmonary arterial hypertension diagnosis. Sue is involved with multiple PH related advocacy groups. Through these groups, she offers support and guidance, particularly in navigating medication funding challenges and accessing the right care, emphasizing the importance of co…
  continue reading
 
When we first enter this world of medical uncertainty as parents, no one gives us a handbook. None one holds our hand to walk us through what to expect, what is coming next, and what life might look like going forward. So we asked this community, if you could go back to the beginning –knowing what you know now– what would you tell yourself as a bra…
  continue reading
 
In this episode, Dr. Scott Olitsky, the Global Center of Excellence Outreach Director for Cure HHT, discusses hereditary hemorrhagic telangiectasia (HHT), a genetic disease characterized by abnormal blood vessel development. HHT can cause bleeding in various parts of the body, with nosebleeds being the most common symptom. In some cases, HHT can le…
  continue reading
 
How do you give your child medical autonomy when they struggle to communicate? How do you determine their preferences when they cannot explain their inner thoughts to you? How do you help them when they cannot tell you where their pain is? These are the questions that keep today’s guest, Suzi Bubion, up at night. Her son, Oliver, is nonspeaking, an…
  continue reading
 
To read this chapter, go here: https://scripturecentral.org/archive/books/book-chapter/thus-saiththelordpropheticlanguageinsamuelsspeech Samuel the Lamanite's speeches are packed with powerful prophetic language, giving us a glimpse into how ancient prophets communicated divine warnings. In Helaman 13–15, he uses six key speech forms to declare God…
  continue reading
 
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 …
  continue reading
 
To read the chapter, go here: https://scripturecentral.org/archive/books/book-chapter/the-case-of-an-unobserved-murder 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 …
  continue reading
 
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…
  continue reading
 
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…
  continue reading
 
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…
  continue reading
 
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 …
  continue reading
 
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…
  continue reading
 
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 …
  continue reading
 
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 …
  continue reading
 
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…
  continue reading
 
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…
  continue reading
 
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…
  continue reading
 
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…
  continue reading
 
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…
  continue reading
 
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…
  continue reading
 
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 …
  continue reading
 
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 …
  continue reading
 
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 …
  continue reading
 
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 …
  continue reading
 
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 …
  continue reading
 
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…
  continue reading
 
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…
  continue reading
 
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…
  continue reading
 
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 …
  continue reading
 
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…
  continue reading
 
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…
  continue reading
 
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…
  continue reading
 
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,…
  continue reading
 
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…
  continue reading
 
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…
  continue reading
 
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 …
  continue reading
 
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 …
  continue reading
 
Loading …

Skrócona instrukcja obsługi