Hope Charities
Honest conversations about bleeding disorders, rare diseases, and chronic illnesses.
Podcasting since 2022 • 28 episodes
Hope Charities
Latest Episodes
How Patients Lose Access to Medication — The Hidden Impact of Alternative Funding Programs
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...
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54:22
Misdiagnosed for 26 Years: Nandini Pethe on Living with Moderate Hemophilia
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 diagn...
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51:58
How to Become a Self-Learner: Life Experience From Jorge de la Riva
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 ...
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25:21
What Does Patient Advocacy Look Like in 2026?
We explore how HR1, a prolonged shutdown, and agency reshuffles affect access, affordability, and safety for people with rare and chronic conditions. With Dane Christensen and Jim Romano, we translate the DC process into patient wins and outlin...
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1:01:07
Recent reporting on Adverse Events: A Thoughtful Conversation on Safety, Transparency, & Next Steps
Jonathan James sits down with Dr. Akshat Jain to address the community’s questions following news of a serious adverse event in an extended trial of a new therapy, Marstacimab. They discuss Pfizer’s transparency, the careful investigative proce...
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42:36