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 diagnosis when symptoms don’t fit neatly into traditional pathways, and how care models are evolving to better support patients living with uncertainty.

Pete Kane, innovator in precision medicine and multi-omics, brings a forward-looking perspective on how advances in biological data and technology are beginning to uncover patterns that traditional diagnostics often miss—opening the door to more personalized, precise care for rare and complex conditions.

Together, this episode explores rare disease through the lenses of the patient, the clinician, and the innovator—connecting lived experience, clinical complexity, and the future of what’s possible in healthcare.

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