When Answers Are Hard to Find: Inside Rare Disease Care
From Patient Innovations by Patient Innovations
April 17, 2026 · 55 min · Season 3 · Episode 19
About this episode
This episode explores the complexities of rare disease care through personal experiences and clinical insights.
In this episode of Patient Innovations , Rashmi and Colleen explore one of the most complex and often misunderstood areas of healthcare: rare disease. While each condition may be considered uncommon, the lived experience is anything but rare for those affected. For many patients, it means navigating daily uncertainty, evolving symptoms, and a long and often frustrating search for answers. This conversation brings rare disease into focus through lived experience, clinical reality, and emerging innovation—highlighting both the gaps in today’s system and the opportunities ahead. We hear from three powerful perspectives: Christine Von Raesfeld , rare disease patient advocate working at the intersection of patient experience, AI, and digital health, shares her personal journey navigating complex, overlapping conditions. She reflects on the emotional and physical toll of living without clear answers, and how that experience has shaped her work in advancing patient-centered data use, privacy, and engagement. Dr. Nancy Cuan , internal medicine physician at Stanford, offers the clinical lens on caring for patients with complex, multi-system conditions. She speaks to the challenges of…
People in this episode
Hosts: Rashmi, Colleen
Guests: Christine Von Raesfeld, Dr. Nancy Cuan, Pete Kane
Topics covered
- rare disease
- healthcare challenges
- patient experience
- clinical care
- innovation
- precision medicine
Keywords
- rare disease
- patient advocacy
- healthcare innovation
- clinical challenges
- precision medicine
Mentioned in this episode
Organizations: Stanford
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