ABOUT THIS PODCAST 🔗
Honest conversations about bleeding disorders, rare diseases, and chronic illnesses.
Hosts:
Update frequency:
every 20 days
Average audio length:
61 minutes
Guest interviews
Has sponsors
English
United States
35 episodes
since March 10, 2022
episodic
LATEST EPISODE 🔗
They told Martin Addie he probably wouldn't live past his teenage years. Today, after more than six decades of living with severe hemophilia, he's sharing the lessons, struggles, and hope that shaped his journey.
In this powerful conversation, Martin reflects on what it was like growing u…
PREVIOUS EPISODES 🔗
Advocacy begins with one voice.After years searching for answers for her daughter, Latasha Holt, PhD discovered that receiving a diagnosis was only the first step. The next challenge was changing systems that weren't built for families living with rare diseases.In this inspiring conversation, …
For full Prescribing Information for VONVENDI, please visit: [https://takeda.info/3RMfhbp]. A bleeding disorder is part of someone’s story — but it is not the whole story. In this episode of the Hope Podcast, Jonathan James talks with Takeda Community Education Specialists Morgan Cook and Maria Roh…
Growing up with severe hemophilia A, Patrick James Lynch was told a different story about what his future might look like. Now, reaching middle age, he reflects on what it means to live in a season of life many in his generation weren’t sure they would see.In this episode of the Hope Podcast, Jonat…
In this powerful episode, Jonathan James sits down with licensed professional counselor, longtime patient advocate, and Mental Health Matters Too founder Debbie De La Riva to pull back the curtain on the hidden mental health realities of living with a bleeding disorder. Together, they explore the a…
You pay for insurance—so why are patients still being denied medication?In this important episode, Jonathan James sits down with healthcare policy advocate Kim Czubaruk to unpack Alternative Funding Programs (AFPs), how they work, and why more patients are facing treatment delays, denials, and conf…
A child with hemophilia should not have to live in constant pain because of where they were born—but for much of the world, that is still reality.In this episode, we sit down with Cindy Komar of Save One Life on World Hemophilia Day to discuss the global treatment gap and what “access to care” real…
Alternative funding programs are rapidly spreading across employer health plans—but many patients don’t understand how these programs can affect their access to medication.In this episode, William Sarraille, professor of practice and patient advocate, explains how AFPs work, why they’re expanding, …
For 26 years, Nandini Pethe was misdiagnosed before learning she was living with moderate hemophilia. In this episode, she shares her journey from unexplained bruising in India to discovering factor VIII levels around 3%—and how the right diagnosis, the right team, and the right data changed her li…
We explore how to become a self-learner in hemophilia, from adherence and refills to evaluating factor, non-factor, and gene therapies. Jorge shares candid lessons on transition to adulthood, community support, and choosing treatments that fit real life.• Why ownership of care decisions matters• Ad…
Disclaimer: The podcast and artwork embedded on this page are from Jonathan James, which is the property of its owner and not affiliated with or endorsed by Listen Notes, Inc.
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