We trace Amanda’s journey from helping her dad infuse to raising two kids while navigating her own diagnosis as an affected woman. The conversation moves from missed signs and medical pushback to advocacy, testing for girls, community support, and practical tools that empower families. • growing up with a dad with severe hemophilia A • invisible symptoms in teen years and surgery complications • being told “just a carrier” versus getting a real diagnosis • marriage, militar...
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We trace Amanda’s journey from helping her dad infuse to raising two kids while navigating her own diagnosis as an affected woman. The conversation moves from missed signs and medical pushback to advocacy, testing for girls, community support, and practical tools that empower families. • growing up with a dad with severe hemophilia A • invisible symptoms in teen years and surgery complications • being told “just a carrier” versus getting a real diagnosis • marriage, militar...
“Financial Assistance Legislative Challenges for people living with hemophilia and other rare disease
Hope Charities
1 hour 31 minutes
3 years ago
“Financial Assistance Legislative Challenges for people living with hemophilia and other rare disease
“Financial Assistance Legislative Challenges” In Episode 6 Jonathan James and James Romano have an important discussion about many of the legislative challenges facing people who need financial assistance while living with a rare or chronic disease like Hemophilia. James talks about the copayment accumulator, third party payments and many other issues that directly impact the financial assistance people are able to receive when living with a rare disease. James is the executive director for U...
Hope Charities
We trace Amanda’s journey from helping her dad infuse to raising two kids while navigating her own diagnosis as an affected woman. The conversation moves from missed signs and medical pushback to advocacy, testing for girls, community support, and practical tools that empower families. • growing up with a dad with severe hemophilia A • invisible symptoms in teen years and surgery complications • being told “just a carrier” versus getting a real diagnosis • marriage, militar...
