A Patient’s Fight for Truly Personalized Care w/ Christine Von Raesfeld

What does personalized medicine really mean—and why does it still feel so out of reach for patients?In this episode, Perry is joined by patient advocate and lived experience expert Christine Von Raesfeld for a powerful conversation that brings the patient voice to the forefront of personalized medicine. Drawing from over 50 years of navigating complex health conditions, Christine challenges the industry’s assumptions and shares what personalized care actually looks like from the inside—fragmented, evolving, and full of unanswered questions.In this episode, you’ll hear about: How personalized and precision medicine are often misunderstood—and why clearer definitions matterWhy the current healthcare system still feels disconnected and siloed for patientsThe importance of patients becoming active participants in their own careHow pharmacogenomics and multi-omic data can help (but aren’t widely accessible)The limitations of a reactive, symptom-based healthcare modelWhy data access and ownership remain major barriers to progressThe tension between privacy and progress in advancing researchHow current clinical trial designs often exclude the patients who need them mostThe need for more holistic, longitudinal, and real-world data in researchHow Christine is contributing her own data to research and helping pioneer a patient-led model of careThe role of education, storytelling, and younger generations in shaping the future of healthcareThe conversation closes with a hopeful look at what’s ahead—where greater collaboration, better data sharing, and a reimagined relationship between patients and providers could finally make personalized medicine a reality.To learn more about Christine's work, visit her Linkedin! —-------Stay connected with our host, Perry Dimas, here on LinkedIn!  📧 Interested in joining our medical director advisory group? Email us at [email protected] 🔗 Connect on LinkedIn: linkedin.com/company/accessdx