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 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