Rare Disease

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?

4 months ago

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,…

5 months ago

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

7 months ago

The New Covid Vaccine Is Out. Why You Might Not Want To Rush To Get It

Covid is commonplace. Some, are laid up with symptoms for days or weeks. A smaller group risks hospitalization or death.…

8 months ago

India’s Pivotal Regulatory Shift: A Possible Game-Changer in Expediting Medicines to Millions in Dire Need

“Go to India” May Be a Key Market for Pharma Company Growth and Global Public Health

9 months ago

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.

9 months ago

StuffThatWorks and The Marfan Foundation to Engage in Pilot Program

joint efforts will form best practices for non-profit health organizations to leverage patient self-reporting with the goal of advancing science,…

10 months ago

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