Outreach Signals
Publishing Details
Contact & Outreach
About This Podcast
Explore Statistics
Recent Episodes
S1 Advocacy in Action with Laurie Gaulter, RN, BSN
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…
S1E11 Growing Up Rare: What Happens Next?
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…
S1E10 Living With Von Willebrand: Jackie’s Story
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…
S1E9 Finally Being Believed
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.…
S1E8 Seeing Women Fully: Addressing the Disparities in Bleeding Disorder Care - Part II
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…
S1E5 Seeing Women Fully: Addressing the Disparities in Bleeding Disorder Care - Part I
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…
S1E7 A Mom’s Story: Loving, Learning, and Living with Duchenne - Part II
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…
S1E6 A Mom’s Story: Loving, Learning, and Living with Duchenne - Part 1
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,…
Rare Lives, Real Need: Blood Donation Matters
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…
S1E4 Beyond the Rx: The Power of Patient Experience in Rare Disease
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…
You are not alone - resources to help
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…
S1E2 Specialty Pharmacy 101: What rare disease patients should expect
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…
S1E1 Welcome to RareAF: Real Talk for Rare Disease
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…
Welcome to Rare AF - Advocacy & Facts
For the ones navigating the rare. For the caregivers, the advocates, the warriors. This podcast is for you. Rare AF - Advocacy & Facts... coming soon.
Frequently Asked Questions
RareAF - Advocacy and Facts has published 14 episodes since November 2025, covering topics in Health & Fitness, Medicine.
RareAF - Advocacy and Facts is currently highly active with new episodes every 2 weeks. Average episode length is 38m.
Sign up on Grep.FM to access contact details for RareAF - Advocacy and Facts, including email and social media links.
Similar Podcasts
Sawbones: A Marital Tour of Misguided Medicine
Justin McElroy, Dr. Sydnee McElroy
584 episodes
The Dr. Hyman Show
Dr. Mark Hyman
1,147 episodes
The Peter Attia Drive
Peter Attia, MD
442 episodes
The Exam Room by the Physicians Committee
Physicians Committee
767 episodes
Dhru Purohit Show
Dhru Purohit
493 episodes
The Curbsiders Internal Medicine Podcast
The Curbsiders Internal Medicine Podcast
500 episodes