Shows
RareAF - Advocacy and FactsFrom Surviving to Thriving: Morgan Barrett's CF JourneyIn 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, Ch...
2026-05-2958 min
RareAF - Advocacy and FactsAdvocacy in Action with Laurie Gaulter, RN, BSNIn 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 to providing emotional support and empowering caregivers through education, this conversation highlights why high-quality nursing care is truly foundational for rare disease patients. The views expressed in this podcast are those of the ind...
2026-05-0827 min
RareAF - Advocacy and FactsGrowing 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 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 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 realit...
2026-04-2037 min
RareAF - Advocacy and FactsLiving With Von Willebrand: Jackie’s StoryIn 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 listen to new episodes of RareAF every month and follow us on Social Media for all the best moments from the show: https://linktr.ee/RareAFpodcast The views expressed in thi...
2026-04-0129 min
RareAF - Advocacy and FactsFinally Being BelievedIn 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,” the physical and emotional toll of misdiagnosis, and the fight to be heard, believed, and properly treated. Through resilience and advocacy, Stormy has transformed her experience into a mission to support others—founding a nonprofit, building community, and amplifying th...
2026-03-2644 min
RareAF - Advocacy and FactsSeeing Women Fully: Addressing the Disparities in Bleeding Disorder Care - Part IIIn 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, misdiagnosed or left undiagnosed altogether.Amber shares insight into the major gaps in diagnosis, the stigma surrounding menstruation and reproductive health, the challenges women face when navigating care between hematology and gynecology, and why quality of life should...
2026-03-1941 min
RareAF - Advocacy and FactsSeeing Women Fully: Addressing the Disparities in Bleeding Disorder Care - Part IIn 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, misdiagnosed or left undiagnosed altogether.Amber shares insight into the major gaps in diagnosis, the stigma surrounding menstruation and reproductive health, the challenges women face when navigating care between hematology and gynecology, and why quality of life should...
2026-03-1247 min
RareAF - Advocacy and FactsA Mom’s Story: Loving, Learning, and Living with Duchenne - Part IIIn 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 of parental advocacy, community, and choosing action overfear. It’s an honest look at what it means to fight for your child, not just with love, but with courage, education, and an unwavering voice. Watch...
2026-02-1750 min
RareAF - Advocacy and FactsA Mom’s Story: Loving, Learning, and Living with Duchenne - Part 1In 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, community, and choosing action over fear. It’s an honest look at what it means to fight for your child, not just with love, but with courage, education, and an unwavering voice. Watch and listen to new...
2026-02-1143 minRareAF - Advocacy and FactsRare Lives, Real Need: Blood Donation MattersBlood 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 rare disease community — and how everyday actions can make an extraordinary difference. Join the effort during Blood Donation Month and donate today.Watch and listen to new episodes of RareAF e...
2026-01-2308 minRareAF - Advocacy and FactsBeyond the Rx: The Power of Patient Experience in Rare DiseaseIn 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 follow us on Social Media: https://linktr.ee/RareAFpodcastThe views expressed in this podcast are those of the individual speakers and guests and do not...
2026-01-1333 minRareAF - Advocacy and FactsYou are not alone - resources to helpEpisode 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: https://linktr.ee/RareAFpodcast. You can also listen to new episodes Spotify, Youtube or Apple Podcasts.Resource Checklist: https://heritagebiologics.com/wp...
2025-12-2334 minRareAF - Advocacy and FactsSpecialty Pharmacy 101: What rare disease patients should expectEpisode 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 stubborn insurance denials. You’ll also hear practical tips on self-advocacy, what you should expect from your specialty pharmacy, and how to find a team that supports your whole life, not just your rare disease.Watch and list...
2025-12-1042 min
RareAF - Advocacy and FactsWelcome to RareAF: Real Talk for Rare DiseaseEpisode 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, financial burden, mental health, caregiver realities, and the isolation so many feel. We highlight expert voices, patient stories, and credible information to help listeners feel informed, empowered, and less alone.Whether you're living with a rare disease, supporting so...
2025-11-2631 minRareAF - Advocacy and FactsWelcome to Rare AF - Advocacy & FactsFor the ones navigating the rare. For the caregivers, the advocates, the warriors. This podcast is for you. Rare AF - Advocacy & Facts... coming soon.
2025-11-0500 min
The Matthew and Rizzle Show[Special Interview] James Waugh, RareAFHey everybody! Matthew here. Rizzle and I had the chance to speak with James Waugh recently. James is the "lead" organizer of the RareAF (Rare Art Festival). Lead is in air quotes because, as anyone familiar with RareAF knows, the whole venture is organized around an ethos of decentralization. Nevertheless, James has been leading the charge in organizing the virtual version of RareAF, which is set to take place next week from May 14~17 in the NFT-based VR world known as Cryptovoxels. James talked about the origins of RareAF, some of the fantastic events, and 50+ speakers on deck, plus all the...
2020-05-0930 min
ART ON THE BLOCKCHAIN PodcastEPISODE 9 Conversation w/ ArtnomeAs part of the Top 5 news, we have identified a few new or current projects we've learned about as a result of the Rare Digital Art Festival on January 13. We've got a lively discussion about the event among ourselves and with our guest, Jason Bailey of Artnome.
1. Art Project Decentralized - This is a blockchain-driven collaborative open source art project by artist Jessica Angel in collaboration with TrueBit.
https://vimeo.com/249089063
https://projects.invisionapp.com/share/R6F7UY5CQ#/screens/269818683_Art_Project
2. Scrilla release December 2017 - You Can't Smoke a Bitcoin. Inspiration? One listener commented: "Sound like the theme...
2018-02-1200 min