RareAF - Advocacy and Facts

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 reflectin...

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 unce...

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 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...

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. We explore how the conversation is shifting from survival to longevity—and what it really means to age w...

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 the challenges women face in getting diagnosed, navigating healthcare with a bleeding disorder, and why awareness and education are critical for better outcomes.   Watch and...

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, miscarriages, and dismissal by providers to finally being diagnosed and becoming a fierce advocate. Her story sheds light on the challenges of being labeled “just a carrier,” th...

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 Month . Together, they unpack the often-overlooked reality that bleeding disorders do not only affect men and boys, women are also deeply impacted, and far too often dismissed...

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 . Together, they unpack the often overlooked reality that bleeding disorders do not only affect men and boys, women are also deeply impacted, and far too often dismissed,...

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 followed,and how she transformed uncertainty into advocacy. From learning to speak up in medical settings to becoming her son’s strongest voice, this conversation highlights the power...

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 transformed uncertainty into advocacy. From learning to speak up in medical settings to becoming her son’s strongest voice, this conversation highlights the power of parental advocacy, commu...

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 treatment, survival, and quality of life. From real patient needs to the behind-the-scenes realities of care, this conversation highlights why donors play such a vital role in the r...

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 outcomes like adherence and readmissions, and how organizations can measure and improve experience without losing the human connection. Watch and listen to new episodes of RareAF and fo...

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 season and where to find help when it’s needed most. Watch and listen to new episodes of RareAF every month and follow us on Social Media for all the best moments from the show:...

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 through how specialty pharmacies coordinate between providers, insurers, manufacturers and patients; monitor side effects and outcomes; and help navigate financial resources and stu...

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 insight, and honest discussion about the challenges millions face every day. Each episode explores topics that matter—diagnosis delays, navigating insurance, treatment options, fina...

For the ones navigating the rare. For the caregivers, the advocates, the warriors. This podcast is for you. Rare AF - Advocacy & Facts... coming soon.