The Fine, But Not Fine Podcast Podcast Por Fine But Not Fine arte de portada

The Fine, But Not Fine Podcast

The Fine, But Not Fine Podcast

De: Fine But Not Fine
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Fine, But Not Fine is a podcast for anyone navigating the messy, frustrating, and often invisible challenges of rare diseases, chronic illness, and the healthcare system. Hosted by Kelly Paul, who has lived with Mycosis Fungoides (a rare form of Cutaneous T-Cell Lymphoma) since 2015, this podcast dives into the real-life struggles of managing an incurable condition while still trying to live a full, meaningful life. Resources: Cutaneous Lymphoma Foundation (https://www.clfoundation.org), International Society for Cutaneous Lymphoma (https://cutaneouslymphoma.org), Lymphoma Research Foundation (lymphoma.org), National Organization for Rare Diseases (rarediseases.org).Copyright 2025 All rights reserved. Ciencias Sociales
Episodios
  • Inside Rare Disease Week: Taking Advocacy to Capitol Hill (Part 2), Ep. 30

    Inside Rare Disease Week: Taking Advocacy to Capitol Hill (Part 2), Ep. 30
    Mar 24 2026

    In Part 2 of my Rare Disease Week experience, I take you inside what it’s actually like meeting with lawmakers and their staff on Capitol Hill. I talk about how patient stories influence policy, how advocacy conversations unfold, and why showing up matters for the rare disease community.
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    8 m
  • Inside Rare Disease Week: A Patient Advocate on Capitol Hill (Part 1), Ep. 29

    Inside Rare Disease Week: A Patient Advocate on Capitol Hill (Part 1), Ep. 29
    Mar 10 2026

    I just returned from Rare Disease Week in Washington, DC, where patients, caregivers, and advocates come together to push for change in the healthcare system. In this episode, I share what federal advocacy actually looks like—from packed briefing rooms to meetings on Capitol Hill—and why these conversations matter so much for people living with rare diseases. I talk about what surprised me, what I learned, and why patient voices are essential in shaping healthcare policy.
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  • Going to DC for Rare Disease Week - Ep. 28

    Going to DC for Rare Disease Week - Ep. 28
    Feb 24 2026

    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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    10 m
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