RareAF - Advocacy and Facts

By RareAF

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Episodes: 14

Description

RareAF – Advocacy and Facts brings real talk to the world of rare diseases. Each episode dives into life with rare and chronic conditions — breaking down the facts, the humanity behind specialty care and the advocacy still needed. Hosted by passionate voices from the rare disease community, Amanda Christian and Brian Rodgers. Whether you’re living rare, working in healthcare, or just curious, we’re here to keep it honest and hopeful. Supported by Heritage Specialty Pharmacy, it’s raw, it’s real, and it’s RareAF.

Episode Date
Advocacy in Action with Laurie Gaulter, RN, BSN
May 08, 2026
Growing Up Rare: What Happens Next?
Apr 20, 2026
Living With Von Willebrand: Jackie’s Story
Mar 31, 2026
Finally Being Believed
Mar 26, 2026
Seeing Women Fully: Addressing the Disparities in Bleeding Disorder Care - Part II
Mar 19, 2026
Seeing Women Fully: Addressing the Disparities in Bleeding Disorder Care - Part I
Mar 12, 2026
A Mom’s Story: Loving, Learning, and Living with Duchenne - Part II
Feb 17, 2026
A Mom’s Story: Loving, Learning, and Living with Duchenne - Part 1
Feb 10, 2026
Rare Lives, Real Need: Blood Donation Matters
Jan 23, 2026
Beyond the Rx: The Power of Patient Experience in Rare Disease
Jan 13, 2026
You are not alone - resources to help
Dec 23, 2025
Specialty Pharmacy 101: What rare disease patients should expect
Dec 10, 2025
Welcome to RareAF: Real Talk for Rare Disease
Nov 26, 2025
Welcome to Rare AF - Advocacy & Facts
Nov 05, 2025