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Hope Charities
Honest conversations about bleeding disorders, rare diseases, and chronic illnesses.
Hope Charities
Latest Episodes
Denied While Insured? Kim Czubaruk Explains Alternative Funding Programs
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),...
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75% of the World Lacks Treatment: The Global Hemophilia Crisis | Save One Life
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 ...
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...
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...
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 ...
