HeyJaredRareAF - Advocacy and Facts
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.
- Indexed episodes, last 90 days
- 2
- Latest publication
- Jul 28, 2026
- Audience
- Checking…
- Earliest in this view
- Jul 10, 2026
Latest episodes
The Confidence Camp Creates (opens the original)
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What happens when kids with rare bleeding disorders find a place where they truly belong? In this episode, Amanda and Bryan are joined by Camp Wilderness Director Luke Saulsberry to explore the life-changing impact of rare disease summer camp. Together, they discuss how camp builds confidence, independence and lifelong friendships while teaching practical skills like self-infusion, self-advocacy and disease management. From behind-the-scenes planning to unforgettable campertransformations, this
TBDC = Less like a conference more like a family (opens the original)
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Recorded live at the Texas Bleeding Disorders Conference in Austin, Texas, this special episode of Rare AF: Advocacy & Facts features conversations with attendees, advocates, healthcare professionals, and conference leaders about the power of community, education, and connection in the bleeding disorders space. From first-time attendees finding support to longtime community members reflecting on how far treatment and advocacy have come, this episode highlights the hope, progress, and relationshi
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