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
Claim This Podcastby RareAF
5.0(2 reviews)
15 episodes
Updated Daily
Accepts GuestsHas Sponsors
Podcast Overview
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.
Language
🇺🇲
Publishing Since
11/5/2025
1 verified contact email on file for RareAF - Advocacy and Facts
Pitch yourself as a guest, propose sponsorships, or reach out directly to the host.
Recent Episodes
May 29, 2026
From Surviving to Thriving: Morgan Barrett's CF Journey
<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, Chronically Candid, have helped her process her experiences and connect with others navigating rare and chronic conditions. </p><p>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.</p>
May 8, 2026
Advocacy in Action with Laurie Gaulter, RN, BSN
<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 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. </p><p>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. </p><p>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. </p><p>All content is current as of the date of recording and may be subject to change. </p><p> </p>
April 20, 2026
Growing Up Rare: What Happens Next?
<p>In this episode, we dive into a conversation that hasn’t gotten nearly enough attention: aging with rare disease. Thanks to major advances in treatment, more individuals are living longer than ever before—but with that progress comes a new set of challenges no one fully has the roadmap for yet.</p><p>We explore how the conversation is shifting from survival to longevity—and what it really means to age well with a rare condition. From chronic inflammation and long-term medication impact to fragmented care systems and the transition from pediatric to adult care, this episode unpacks the realities patients and families are navigating in real time.</p><p>We also get into the practical side of things—how to maintain independence, protect your healthspan, and advocate for yourself in a complex healthcare system. Plus, we talk about the role of movement, nutrition, mental health, and financial planning in building a life that lasts—not just one that’s longer.</p><p>This is the first generation of rare disease patients truly aging—and their voices, experiences and insights are shaping the future of care.</p><p><strong>Because it’s no longer about just surviving—it’s about how we live.</strong></p><p><br></p><p><br></p><p>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. </p><p>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. </p><p>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. </p><p>All content is current as of the date of recording and may be subject to change. </p>
15 total episodes available
Deep-dive analytics for RareAF - Advocacy and Facts
Frequently asked questions
Have a different question and can't find the answer you're looking for? Reach out to our support team by sending us an email and we'll get back to you as soon as we can.
- What is RareAF - Advocacy and Facts?
- How often does this podcast release new episodes?
This podcast updates daily.
- Where can I listen to this podcast?
This podcast is available on 4 platforms including Apple Podcasts, Spotify, and more. You can also use the RSS feed directly.
- Does this podcast accept guests?
Yes, this podcast regularly features guests.
Legal Disclaimer
Pod Engine is not affiliated with, endorsed by, or officially connected with any of the podcasts displayed on this platform. We operate independently as a podcast discovery and analytics service.
All podcast artwork, thumbnails, and content displayed on this page are the property of their respective owners and are protected by applicable copyright laws. This includes, but is not limited to, podcast cover art, episode artwork, show descriptions, episode titles, transcripts, audio snippets, and any other content originating from the podcast creators or their licensors.
We display this content under fair use principles and/or implied license for the purpose of podcast discovery, information, and commentary. We make no claim of ownership over any podcast content, artwork, or related materials shown on this platform. All trademarks, service marks, and trade names are the property of their respective owners.
While we strive to ensure all content usage is properly authorized, if you are a rights holder and believe your content is being used inappropriately or without proper authorization, please contact us immediately at hey@podengine.ai for prompt review and appropriate action, which may include content removal or proper attribution.
By accessing and using this platform, you acknowledge and agree to respect all applicable copyright laws and intellectual property rights of content owners. Any unauthorized reproduction, distribution, or commercial use of the content displayed on this platform is strictly prohibited.