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Rare and Orphan Diseases

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Reevaluating Ehlers-Danlos Syndrome: How Vascular EDS Patients Are Left Behind

EDS Subtyping May Not Be a Harmless Convention, But a Recipe for Patient Danger

Looking for Zebras: Listening to Patients, Healing the Health System

When the health ecosystem discounts patient experience, it fails individuals and incurs added costs. Delayed diagnoses lead to prolonged suffering, reduced quality of life, and higher medical expenses.

Why Healing Still Begins with Relationship

When I discuss Healing the Sick Care System: Why People Matter with audiences, I expect nods of recognition acknowledging the mess and the hopelessness...

The Disorder That Makes Monster Faces Out of Everyone You See

A rare neurologic disorder turns ordinary faces into disturbing monster-like ones, and research is searching for the answer.