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Hosted by RareAF · 🇺🇸 us · EN · 17 episodes
Established thought leaders with verified media credentials.
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 hosts RareAF - Advocacy and Facts, a health show with 17 episodes published.
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 ra
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 lead
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). Mo
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). Mo
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. With nearly two decades of experience in home infusio
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 p
In this episode of Rare AF: Advocacy & Facts, shares her powerful journey living with von Willebrand disease—from being diagnosed at age nine to finding education, community, and empowerment later in life. She discusses
In this episode of Rare AF: Advocacy & Facts, In this episode, Stormy Rogers shares her powerful journey as a woman living with hemophilia—one that went unrecognized and untreated for decades. From severe bleeding, misca
In this episode of Rare AF: Advocacy & Facts, Amanda and Brian sit down with women’s health advocate and bleeding disorders expert Dr. Amber Federizo for an important conversation during Bleeding Disorders Awareness Mont
In this episode of Rare AF: Advocacy & Facts, Amanda and Brian sit down with women’s health advocateand bleeding disorders expert Dr. Amber Federizo for an important conversation during Bleeding Disorders Awareness Month
In part II of this episode, we continue the conversation with a Shelbi Conover, a mother navigating life after her son’s Duchenne muscular dystrophy diagnosis. She shares the moment everything changed, the fear that foll
In this episode, we sit down with a Shelbi Conover, a mother navigating life after her son’s Duchenne muscular dystrophy diagnosis. She shares the moment everything changed, the fear that followed, and how she transforme
Blood donation is more than a kind gesture — it’s a lifeline. In this episode of Rare AF, we explore why blood donation is critical for patients living with rare diseases and how a single donation can directly impact tre
In this episode we explore why PX is a critical part of rare disease care—not an afterthought. Joined by special guest, Shannon Schulz, the conversation dives into what PX really means, how empathy and trust impact outco
Episode three of RareAF: Advocacy & Facts, In episode three of Rare AF, we celebrate the holidays while shining a light on resources that support the rare disease community. This episode explores the realities of the sea
Episode two of RareAF: Advocacy & Facts, Brian and Amanda break down what a specialty pharmacy really is—and why it should feel like an extension of your care team, not just a place that ships medication. They talk throu
Episode one dives into the who and the why behind the podcast. Hosted by Brian, a rare disease patient and advocate, and Amanda, seasoned rare-disease nurse and educator. RareAF brings together lived experience, expert i
For the ones navigating the rare. For the caregivers, the advocates, the warriors. This podcast is for you. Rare AF - Advocacy & Facts... coming soon.
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RareAF - Advocacy and Facts is hosted by RareAF. The show is categorised under health (fitness) and has published 17 episodes.
RareAF - Advocacy and Facts has published 17 episodes.
RareAF - Advocacy and Facts regularly covers health, fitness, medicine. It sits in the health category, with a fitness focus.
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Episodes of RareAF - Advocacy and Facts average 39 minutes. a focused format where a clear narrative arc and tight preparation matter most.
Our data rates RareAF - Advocacy and Facts's guest bar at 80/100 (Premium tier). Established thought leaders with verified media credentials. Sign in to PitchCentric to see how your own Pod Score compares against this show.
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