Rare Disease 팟 캐스트

Dear warriors was created to help bring light to what has been in the shadows for many years; the rare disease community. This podcast will allow recipients/patients, family or anyone caring for someone with a rare disease an opportunity to tell their story. Our Goal is to help people living in this community feel less isolated, better informed and more engaged.

A weekly podcast highlighting the most important news developments and its impact on the orphan drug, cell and gene therapy world. Visit www.partners4access.com/podcasts/

If you or someone you love is affected by a rare disease, you likely have more questions than answers. That’s why we’re here. Rare Disease Connection, and our additional resources on RareDisease.com and YourDNA.com, brings together the people whose expertise can explain what you’re facing. From diagnosis, to prognosis, to treatment options, all the way to questions like “Who do I talk to? Where are the people who’ve been through this before?”. We have the answers, direct from the experts and ...

Wait how do you spell that? is a rare disease podcast produced by Patient Worthy. We talk about issues affecting people rare and underdiagnosed conditions and interview advocates from across the community. We're definitely not doctors, and we can't give you medical advice. We're just here to chat and laugh and learn about issues that impact people living with diseases our doctors can't to spell.

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, Odd & Complicated Diseases, Health Education & Nursing Anecdotes

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

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.

Two Rare Mama Bears, a Cure CMD Podcast - where we discuss all things Congenital Muscular Dystrophy and Rare Disease...All subtypes, ages, abilities and topics with the intent to connect the CMD community. This podcast is about bringing together affected individuals, their family, researchers, clinicians, industry, and policy-makers to have conversations with the goal of moving the needle on the mission of Cure CMD. Hosts: Megan Meyer and Matty Manley.

Lori Rohlinger is a former pastor's wife who has endured losing her husband to a rare disease but still remains positive that God has a plan for her widowed life. In her podcast, Lori shares her real life experiences from grief to joy and all the in-between. She is a single parent raising four children and learning what it looks like to move forward without the love of her life. Lori loves to share how good and faithful God has been to her, even in the midst of her Beautifully Broken life.

PSC Mami: Stories at the intersection of PSC and parenthood. You are diagnosed with a rare, incurable disease. You are young. You had a vision for your future. You wanted kids. But can you? As a parent you want the best for your kids, but then they are diagnosed with PSC, what does their future hold? People who have been there talk about how a diagnosis of Primary Sclerosing Cholangitis, a rare autoimmune disease, reshaped their vision of their lives and parenthood.

Affecting less than 200,000 people in the US each year, sickle cell disease (SCD) remains a rare but painful and often misunderstood illness. Patients suffering from SCD often fly under the radar for critical early-stage diagnosis, which can lead to future complications and poor outcomes. This series seeks to bridge the gap in SCD education for healthcare providers on the frontlines of emergency medicine to improve patient care. Hear from experts in the field as they discuss common misconcep ...