RareAF - 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. 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.

RareAF - Advocacy and Facts is a health podcast hosted by RareAF, with 17 episodes on record and a Required Pod Score of 80. PitchCentric scores this show on Booking Probability, Listen Score, and live audience signals refreshed every 24 hours.

RareAF hosts RareAF - Advocacy and Facts, a health show with 17 episodes published.

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  RareAF - Advocacy and Facts

  The Confidence Camp Creates

  Jul 28, 20261h 8m

  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 conversation highlights why camp is so much more than a week of fun, it's a place where kids discover they're never alone and leave empowered to thrive long after camp ends. The views expressed in this podcast are those of the individual speakers and guests and do not necessarily reflect the views of Heritage Specialty Pharmacy or any affiliated entities. This podcast is provided for informational and educationalpurposes only and is not intended to provide medical, legal, or other professional advice, nor to replace the guidance of a qualified healthcare professional. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition, treatment, or health‑related decision. Some speakers featured in this podcast may be employees or representatives of Heritage Specialty Pharmacy. Guests or speakers who share personal experiences are sharing their own perspectives only. Individual experiences and outcomes may vary, and listeners should not rely on anecdotal information when making medical or healthcare decisions. This podcast may include discussion of specific therapies, products, brands, companies, or treatment approaches. Such discussion is provided for general awareness only and does not constitute endorsement, recommendation, or affiliation by Heritage Specialty Pharmacy. Any references to products or services offered by Heritage Specialty Pharmacy are for informational purposes only and are not intended asan advertisement or solicitation. Trademarks and brand names mentioned are the property of their respective owners. All content is current as of the date of recording and may be subject to change.

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  Episode #16

  TBDC = Less like a conference more like a family

  Jul 10, 202647 minS1

  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 relationships that continue to shape the future of care. Join us as we explore why events like this conference are so impactful for patients, families, and providers alike. The views expressed in this podcast are those of the individual speakers and guests and do not necessarily reflect the views of Heritage Specialty Pharmacy or any affiliated entities. This podcast is provided for informational and educational purposes only and is not intended to provide medical, legal, or other professional advice, nor to replace the guidance of a qualified healthcare professional. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition, treatment, or health‑related decision. Some speakers featured in this podcast may be employees or representatives of Heritage Specialty Pharmacy. Guests or speakers who share personal experiences are sharing their own perspectives only. Individual experiences and outcomes may vary, and listeners should not rely on anecdotal information when making medical or healthcare decisions. This podcast may include discussion of specific therapies, products, brands, companies, or treatment approaches. Such discussion is provided for general awareness only and does not constitute endorsement, recommendation, or affiliation by Heritage Specialty Pharmacy. Any references to products or services offered by Heritage Specialty Pharmacy are for informational purposes only and are not intended as an advertisement or solicitation. Trademarks and brand names mentioned are the property of their respective owners. All content is current as of the date of recording and may be subject to change. Episode Resources: https://www.lonestarbleedingdisorders.org https://www.texcen.org https://web.cvent.com/event/4020c5ad-93a1-49ee-805c-b2c932d4fee6/summary

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  Episode #11

  From Surviving to Thriving: Morgan Barrett's CF Journey

  May 29, 202659 minS1

  <p>In honor of Cystic Fibrosis Awareness Month, Brian and Amanda sit down with writer, photographer, podcaster, and chronic illness advocate Morgan Barrett for an honest conversation about life with cystic fibrosis (CF). Morgan shares her experience growing up with a rare genetic disease, being diagnosed at age seven alongside her sister, and navigating years of treatments, hospitalizations, and uncertainty before the arrival of life-changing CF modulator therapies. </p><p>The conversation also explores motherhood, chronic illness, mental health, healthcare access, advocacy, and the importance of finding identity beyond a diagnosis. Morgan shares how writing and storytelling through her podcast, Ch...

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  Episode #11

  From Surviving to Thriving: Morgan Barrett's CF Journey

  May 29, 202659 minS1

  In honor of Cystic Fibrosis Awareness Month, Brian and Amanda sit down with writer, photographer, podcaster, and chronic illness advocate Morgan Barrett for an honest conversation about life with cystic fibrosis (CF). Morgan shares her experience growing up with a rare genetic disease, being diagnosed at age seven alongside her sister, and navigating years of treatments, hospitalizations, and uncertainty before the arrival of life-changing CF modulator therapies. The conversation also explores motherhood, chronic illness, mental health, healthcare access, advocacy, and the importance of finding identity beyond a diagnosis. Morgan shares how writing and storytelling through her podcast, Chronically Candid , have helped her process her experiences and connect with others navigating rare and chronic conditions. This episode is sponsored by Heritage Specialty Pharmacy. The views and experiences shared are those of the guest and are provided for general informational and community awareness purposes only. References to specific medications, including Trikafta (elexacaftor/tezacaftor/ivacaftor) and other therapies mentioned in this episode, reflect individual patient experience only and are not intended as an endorsement, recommendation, or medical advice. Heritage Specialty Pharmacy does not dispense or manage therapies for cystic fibrosis and does not promote any specific medication discussed. This discussion does not include complete information about the benefits, risks, or safety profiles of any medications mentioned. Listeners should consult their healthcare provider before making any decisions about treatment or care.

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  RareAF - Advocacy and Facts

  Advocacy in Action with Laurie Gaulter, RN, BSN

  May 7, 202627 minS1

  <p>In this episode, hosts Brian and Amanda sit down with Laurie Gaulter to explore the powerful role nursing plays in rare disease care — especially in the home setting.</p><p>With nearly two decades of experience in home infusion and rare disease nursing, Lori shares how nurses become far more than clinicians for patients and families navigating complex diagnoses. From recognizing subtle changes in health to providing emotional support and empowering caregivers through education, this conversation highlights why high-quality nursing care is truly foundational for rare disease patients. </p><p>The views expressed in this podcast are those of the ind...

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