RareAF - Advocacy and Facts

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. 

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 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.

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    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 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.

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, 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 be a central part of the conversation. This episode shines a light on the systemic disparities affecting women with inherited bleeding disorders and why awareness, better language and stronger advocacy are urgently needed.This is part one of a two-part conversation. Part two drops next week.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 This episode is sponsored by Octapharma. The guest appearing in this episode has a professional affiliation with Octapharma and is speaking in her personal capacity. Her statements and perspectives are her own and do not necessarily reflect the views of Octapharma, Heritage Specialty Pharmacy, or any affiliated entities. 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. This podcast is provided for informational and educational purposes only and is not intended to provide medical advice or replace the guidance of a qualified healthcare professional. Always consult your healthcare provider regarding medical decisions. Discussion of therapies, products, companies, or treatment approaches is provided for general informational purposes only and does not constitute endorsement, recommendation, or affiliation by Heritage Specialty Pharmacy. Trademarks and brand names mentioned are the property of their respective owners. Content is current as of the date of recording.

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, 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 be a central part of the conversation. This episode shines a light on the systemic disparities affecting women with inherited bleeding disorders and why awareness, better language and stronger advocacy are urgently needed.This is part one of a two-part conversation. Part two drops next week.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   This episode is sponsored by Octapharma. The guest appearing in this episode has a professional affiliation with Octapharma and is speaking in her personal capacity. Her statements and perspectives are her own and do not necessarily reflect the views of Octapharma, Heritage Specialty Pharmacy, or any affiliated entities. 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. This podcast is provided for informational and educational purposes only and is not intended to provide medical advice or replace the guidance of a qualified healthcare professional. Always consult your healthcare provider regarding medical decisions. Discussion of therapies, products, companies, or treatment approaches is provided for general informational purposes only and does not constitute endorsement, recommendation, or affiliation by Heritage Specialty Pharmacy. Trademarks and brand names mentioned are the property of their respective owners. Content is current as of the date of recording.

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 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 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 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. 

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, 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 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 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. 

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 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 every month and follow us on Social Media for all the best moments from the show: https://linktr.ee/RareAFpodcastWhere to Donate? AABB: www.WhereToDonateBlood.org; +1.301.907.6977  America’s Blood Centers: www.AmericasBlood.org; +1.202.393.5725  American Red Cross: www.RedCrossBlood.org; +1.800.RED CROSS (+1.800.733.2767) Donate Blood | Find a Local Blood Drive | American Red Cross Donate Blood - Community Blood Center of Greater Kansas City (CBC) Plasma Donation USA | Find Plasma Donation Centers Near You Find a Plasma Donation Center Near You | Octapharma Plasma Centers Plasma donation at KEDPLASMA - KEDPLASMA Find A Plasma Donation Center - Grifols Find a Plasma Donation Center Near You | CSL Plasma Find a Plasma Donation Center Near You | BioLife Plasma Services ResourcesBlood products: Blood donation Blood safety and availability Facts About Blood Supply In The U.S. | Red Cross Blood Services Search Publications | NHLBI, NIH Ensuring a Safe and Sufficient Global Blood Supply | New England Journal of Medicine 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. 

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 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 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.  References https://pubmed.ncbi.nlm.nih.gov/39403289/https://www.ahrq.gov/cahps/quality-improvement/improvement-guide/improvement-guide.html  https://www.ahrq.gov/cahps/surveys-guidance/home/index.html   https://www.ahrq.gov/cahps/quality-improvement/improvement-guide/2-why-improve/index.htmlhttps://www.ahrq.gov/cahps/about-cahps/patient-experience/index.html  https://edhub.ama-assn.org/steps-forward/module/2702560  https://chapinc.org/blog-news/perception-is-patient-reality-experience-vs-satisfaction/https://www.healthcareittoday.com/2025/05/13/seeking-a-seamless-patient-experience-at-the-beryl-institute/https://jamanetwork.com/journals/jama-health-forum/fullarticle/2834514https://pmc.ncbi.nlm.nih.gov/articles/PMC6664367/https://www.pslhub.org/learn/patient-engagement/how-to-engage-for-patient-safety/nhs-improvement-patient-experience-improvement-framework-june-2018-r548/https://knowledgehub.health.gov.za/system/files/elibdownloads/2022-06/PEC%20SURVEY%20GUIDELINE%20APPROVED.pdfhttps://www.qualtrics.com/articles/customer-experience/patient-experience/https://www.relias.com/blog/patient-experience-vs-patient-satisfaction-whats-the-differencehttps://theberylinstitute.org/defining-patient-experience/  https://theberylinstitute.org/patient-family-advisors/   https://webmdignite.com/blog/how-patient-experience-different-patient-satisfaction  

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:  https://linktr.ee/RareAFpodcast. You can also listen to new episodes Spotify, Youtube or Apple Podcasts.Resource Checklist: https://heritagebiologics.com/wp-content/uploads/2025/12/resourcechecklist.pdf Rare Disease Specific National Organization for Rare Disorders (NORD) — Rare Disease Community - National Organization for Rare Disorders PAN Foundation (Patient Access Network Foundation) —  PAN Foundation - Patient financial assistance, advocacy, and education Ben's Friends — Patient Communities for People with Rare Diseases Take Part Foundation — Take Part Foundation Serenely Guided Foundation —  Rare Diseases Support | Serenely Guided Foundation In conjunction with Mom’s Meals GARD (Genetic and Rare Diseases Information Center) Every Life Foundation The Hope Project for Kids Hope Kids Rare Diseases Clinical Research Network Take Part Foundation RareKC – Look for local organizations for less competition MGA/Hope for Hemophilia/CureDuchenne- Look for disease specific organizations Accessia Health Rare Diseases International- For listeners outside of US Caregiver Action Network- For rare disease caregiver support/resources General Assistance United Way | United Way Worldwide  Donate to Feeding America | Feeding America Home Page - Volunteers of America Home - Family Promise  Location Search | The Salvation Army USA 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.  

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 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 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. 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.  Resources: Rare Diseases: Although Limited, Available Evidence Suggests Medical and Other Costs Can Be Substan…Cost of Rare Diseases: The Trillion-Dollar Impact | RareDisease.net

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, 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 someone who is, or working in the healthcare space, RareAF is here to amplify voices, share resources, and build a stronger, more connected community.New episodes dive into everything from women’s health and bleeding disorders to clinician-led care, specialty pharmacy, quality of life, and beyond.You’re not alone. Your story matters. And together, we can move the needle for rare disease.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.  DisclaimerThe views expressed in this podcast are those of the speakers and do not necessarily reflect the views of Heritage Specialty Pharmacy. This content is provided for informational purposes only and should not be relied upon as professional medical advice. All statements are made as of the date of recording and are subject to change.This podcast is for informational and educational purposes only and is not intended to provide medical advice or to replace the guidance of a qualified healthcare professional. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition or treatment.”Discussions of specific therapies, brands, or treatment approaches do not constitute endorsement by Heritage Specialty Pharmacy. Product information is provided for general awareness and may not be appropriate for all individuals.Mention of any specific product, company, or organization does not imply endorsement or affiliation by Heritage Specialty Pharmacy. Any trademarks or brand names mentioned are the property of their respective owners. Resources: Rare Disease Facts and Statistics | NORDhttps://www.definitivehc.com/blog/top-rare-diseaseshttps://www.genome.gov/FAQ/Rare-Diseaseshttps://www.gao.gov/products/gao-22-104235https://raredisease.net/costhttps://ojrd.biomedcentral.com/articles/10.1186/s13023-022-02299-5

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