Showing results for "Rara" in Physical Illness & Disease

Fighting sarcoidosis as well as other rare diseases.

Dobro došli na podcast! Ovo je naše: “Zašto Rare & Share?”: Tokom lečenja sina od retke bolesti, a posebno nakon izlečenja imali smo prilike da upoznamo sjajne ljude i čujemo vrlo inspirativne priče. Ceo jedan svet sa svojim temama. Ovde ćemo pričati sa onima koji su pokretali lavine događaja, menjali okvire, pomerali granice do tada poznatog. Želimo da razgovaramo o temama koje su važne onima koji se suočavaju sa retkim izazovima kao što su pravni i zakonski okviri, aspekat psihološke podrške, medicinska dostignuća i nove studije. Planiramo razgovarati sa ekspertima, ...

Your Podcast for Rare Kidney Conversations Life with a rare kidney disease can be complex, isolating, and often misunderstood. Rare Kidney Source brings together voices from across the community to inform, inspire, and connect people living with rare kidney diseases such as C3 glomerulopathy (C3G) and primary immune-complex membranoproliferative glomerulonephritis (IC-MPGN). Through honest conversations and expert insights, we explore the realities of diagnosis, disease management, and everyday life to empower listeners with knowledge, perspective, and a sense of belonging to navigate their ...

The Rare Rebels™ Podcast shares unscripted conversations with patients, caregivers, advocates, and researchers who are changing the future of rare disease. These aren’t polished soundbites — they’re real voices from the front lines, revealing the humanity, heartbreak, and hope woven into the rare disease experience.Because change doesn’t happen through statistics alone — it happens through connection.Hosted by award-winning storyteller and advocate Melody Joy Paine, Rare Rebels™ brings lived experiences to the forefront, bridging gaps between families, researchers, nonprofits, ...

Following up on the Rare Trials Summit, we present to you the Rare Trials Podcast. Our goal is to bring you PI and sponsor level information and support, backed by both experience and trends.

3.5 million people in the UK live with a rare disease, so while each disease is individually rare, together rare diseases are common. Hear interviews with patients, clinicians, advocates, students and researchers focusing on rare disease in clinical medicine. This podcast is brought to you by Medics for Rare Disease. Podcast distributors create their own transcripts and M4RD doesn’t take responsibility for them

Orphan is about the struggle to save the lives of children who, because of an unlucky roll of the genetic dice, are born with any one of several thousand rare genetic disorders. Many are burdened with diseases that carry mysterious names, some of which you will hear about for the first time in this audiobook, along with compelling stories about the physicians, scientists, and parents who have taken them on.

Bienvenue dans “Le QG des Maladies Rares”, un podcast porté par l’association Margot pour la vie. Ici, nous donnons la parole à celles et ceux qui font vivre un projet profondément humain : un lieu d’accueil, d’écoute et d’accompagnement pour les enfants atteints de maladies rares et leurs familles. Guidé par la voix de Gilles Halais, journaliste et narrateur engagé, ce podcast vous plonge au cœur d’une aventure humaine faite d’émotions, de rencontres et d’espoir. Épisode après épisode, vous découvrirez les valeurs, les histoires et les énergies qui donnent vie ...

En este podcast entrevistamos a un genetista sobre una enfermedad rara particular, en la fecha en que se conmemora el día internacional o mundial de ese padecimiento, con solo 5 preguntas: ¿qué es? ¿cómo se diagnostica? ¿cómo se trata? ¿por qué conmemorarlo ese día? y ¿dónde buscar más información? Hosted on Acast. See acast.com/privacy for more information.

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

Welcome to KCNA2 & Rare Epilepsy Podcast, a podcast created for the people living this journey and the people working to understand it. Each episode, hosted by Dr. Nancy Musarra, invites listeners into honest, generous, and sometimes vulnerable conversations with parents, researchers, clinicians, and board members to discuss the daily experiences of living with KCNA2, seizures, and other rare forms of epilepsy. You’ll hear stories, questions, and hopes from people who understand and are living with this disease. Our mission is to raise awareness, build connections and foster hope. This isn...

Hosted by HCPLive, the monthly series tackles the intricate details of the 6,000-plus known rare diseases, featuring an expert guest, one disease at a time.

🎙️ Dessine-moi un cœur – Podcast Le récit intime et courageux d’une battante face à un cancer rare. À travers ce podcast, je partage mon parcours contre une maladie peu connue : la maladie de Paget extra-mammaire secondaire. Quatre années d’errance médicale, de doutes, de douleurs, d’espoir et de combats. Ici, je mets des mots sur l’invisible. Je parle de la peur, de l’annonce, des traitements, de la vie de maman, de femme, et de l’impact d’un cancer rare sur le quotidien. Ce podcast est un espace de vérité, de vulnérabilité et de force. Un témoignage pour ...

Sir Alexander Fleming (August 6, 1881 - March 11, 1955) was a Scottish biologist, pharmacologist and botanist. He wrote many articles on bacteriology, immunology, and chemotherapy. His best-known discoveries are the enzyme substance lysozyme in 1923, and the anitbiotic substance penicillin from the mould Penicillium notatum in 1928, for which he shared the Nobel Prize in Physiology or Medicine in 1945 with Howard Florey and Ernst Boris Chain. This audiobook is from a 1950 talk he gave on the development of antibiotics.

A podcast focused on rare disease research, created by Share4Rare, an initiative by the Sant Joan de Déu Research Foundation that promotes collaborative research and connects patients and families affected by rare diseases worldwide, and by the Weber Foundation. In each episode, we delve into various topics related to advances in rare disease research, featuring expert insights, patient stories, and family perspectives. Let’s explore the Rare Horizons! Hosted on Acast. See acast.com/privacy for more information.

In rarity we unite, connect and find our way to purpose.

Rare Living with Giusiana explores the challenges, triumphs, and realities of life with rare diseases and chronic illnesses. Join host Giusiana as she sits down with inspiring guest speakers—patients, caregivers, advocates, and experts—to share heartfelt stories, insights, and resources. Together, they navigate the complexities of living rare, building understanding, and fostering community.

Welcome to the new Rare Kidney Disease Show part of the RKD Scientific Network sponsored by Travere Therapeutics. The Rare Kidney Disease Show is your primary source for cutting-edge insights, expert perspectives, and pivotal updates in nephrology. Led by our panel of experts, explore the advances in glomerular nephropathies through compelling conversations, challenging case studies, and discussions tackling hot topics. Join us as we strive to provide you with the ultimate resource to support your clinical practice and advance patient care.

Surviving Myotonic Dystrophy is about Ann S. Woodbury’s struggle to care for her family who have a rare disease - myotonic dystrophy (DM). Ann’s four children and her husband have DM. In 1998, at the time of the diagnosis, even the doctors didn’t know all of the effects of DM or that it was a brain disorder. Listening to this book will take you on a journey of understanding this disease and its effects on Ann’s family members.

Some sickness you hear about every day. Some illnesses you rarely hear about or come across. Some things like allergies to the cold or semen or exotic disorders or diseases.