RareAF - Advocacy and Facts

From Surviving to Thriving: Morgan Barrett's CF Journey

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.  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.  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.

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 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 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.  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.  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.  All content is current as of the date of recording and may be subject to change.

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 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 realities patients and families are navigating in real time. 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. This is the first generation of rare disease patients truly aging—and their voices, experiences and insights are shaping the future of care. Because it’s no longer about just surviving—it’s about how we live. 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.  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.  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.  All content is current as of the date of recording and may be subject to change.

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 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 [https://linktr.ee/RareAFpodcast]   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.  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.  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.  All content is current as of the date of recording and may be subject to change.

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. 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 the voices of women living with bleeding disorders and rare diseases.   To learn more about Stormy’s work and support her mission, visit www.waveofsupport.org [http://www.waveofsupport.org/]      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 [https://linktr.ee/RareAFpodcast]     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.  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.  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.  All content is current as of the date of recording and may be subject to change.