Going to DC for Rare Disease Week - Ep. 28 episode artwork

EPISODE · Feb 24, 2026 · 9 MIN

Going to DC for Rare Disease Week - Ep. 28

from The Fine, But Not Fine Podcast · host Fine, But Not Fine

This episode is the “before.” Before I head to Washington, DC for Rare Disease Week on Capitol Hill, I share why I said yes, how I’ve prepared, and what I’ll be advocating for as a rare disease patient. We talk about insurance denials, the Protect Rare Act, and how advocacy can look different for each of us—at the national, state, or local level.

This episode is the “before.” Before I head to Washington, DC for Rare Disease Week on Capitol Hill, I share why I said yes, how I’ve prepared, and what I’ll be advocating for as a rare disease patient. We talk about insurance denials, the Protect Rare Act, and how advocacy can look different for each of us—at the national, state, or local level.

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Going to DC for Rare Disease Week - Ep. 28

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This episode was published on February 24, 2026.

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This episode is the “before.” Before I head to Washington, DC for Rare Disease Week on Capitol Hill, I share why I said yes, how I’ve prepared, and what I’ll be advocating for as a rare disease patient. We talk about insurance denials, the Protect...

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