Résultats pour "Rara" dans Maladie et pathologies physiques

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 ...

This program is read by the author. In The Genome Odyssey, Dr. Euan Ashley, Stanford professor of medicine and genetics, brings the breakthroughs of precision medicine to vivid life through the real diagnostic journeys of his patients and the tireless efforts of his fellow doctors and scientists...

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, ...

In Rare Stories erzählen Menschen von ihren Erfahrungen mit seltenen Erkrankungen. Sie teilen ihre persönlichen Geschichten, geben wertvolle Alltagstipps und schenken Mut. Auch Angehörige berichten von ihren Erlebnissen, und Expert*innen liefern hilfreiche Einblicke. Jeden Monat eine neue Folge mit inspirierenden Geschichten und spannenden Insights. Hör mal rein und lass dich berühren!

Fighting sarcoidosis as well as other rare diseases.

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...

🎙️ 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 ...

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

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.

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.

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, ...

À propos : "RARE à l'écoute" est un podcast dédié à la sensibilisation aux maladies rares et au soutien des personnes touchées par ces affections. Créé par un groupe passionné de professionnels de la santé, le podcast vise à informer les professionnels de santé et fournissant des informations sur les dernières avancées médicales et scientifiques dans le domaine des maladies rares, et inspirer les patients et leurs proches en partageant des histoires de courage et de persévérance.Contenu : 🔍 "RARE à l'écoute" sensibilise les professionnels de santé et le grand public aux...

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.

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.

Since 1989, Patient Services Incorporated has restored hope and health to chronic and rare disease patients. We truly admire the many perspectives we come across in our line of work. This inspired our new podcast, Rare Perspectives, where we go beyond the diagnosis and explore the heart of the experience. Our goal is to shed light on the paths that patients walk and highlight different perspectives. We hope their stories help to educate you about chronic illness.

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

News and clinical perspective including CME programs focused on rare diseases. CheckRare focuses on rare and neglected diseases.

Timely diagnosis of patients with a rare genetic disease is a real challenge.Through this podcast series, you will learn more about how we inform/support healthcare professionals to accelerate early detection.This content is intended for healthcare professionals in Belgium and Luxembourg and is brought to you by Takeda Belgium.This podcast series on Fabry Disease with 7 episodes has been co-created with your colleagues with focus on 4 areas:1. Rare Diseases with Prof. Dr. David Cassiman: a. episodes 1 : the importance of early diagnosisb. episode 2: the referral trajectory2. Cardiology with ...

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.