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Rare and Orphan Diseases

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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...

Invisible Disabilities Need Our Attention and Understanding Like No Others

Subtle differences in behavior and ineptness in social interactions are only some of the overt symptoms of neurodivergent disorders.

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.

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