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Rare Disease

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Real-World Evidence Unlocks Consumer Voice to Improve Care

Patient Experience is the Key to Improving Drug Development and Health Care, but Are We Listening?

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.

Biotech Without Borders: Reclaiming the Wonder of Science in a Distracted Age

I was in the media bullpen with the team when the future arrived. The launch of Roferon-A, alpha interferon marked a watershed moment in medicine:...