Showing results for "Rara" in Physical Illness & Disease

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, ...

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, ...

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...

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 ...

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

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.

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!

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.

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.

Formerly Nutrition Equity, rare connection is an extension of the podcast to include all 10,000 rare conditions and not just those covered by the Medical Nutrition Equity Act. Some of the conditions may be the same, but I am trying to turn this into a learning experience for those in the medical feild, policy leaders, and those who are just interested in hearing about rare conditions and patient stories. Rare conditions are called zebras hence the zebra striped ribbon. More common conditions are called horses. Doctors tend to learn a lot about the common conditions, but rare ...

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.

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.

Openly Rare with Paul Kidwell explores all aspects of rare diseases.

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.

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...

John R. Brinkley (July 8, 1885-May 26, 1942) became nationally known as the "goat gland doctor" for his controversial medical practice that promised virility for his male patients. He was a pioneer in radio broadcasting and advertising, as he promoted his services to his large listening audience. Despite detractors and critics in the medical community thoroughly discrediting his methods, Brinkley operated clinics and hospitals in several states for two decades.

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

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.

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 ...