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Rare and Orphan Diseases

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Hair Loss: The Hidden Toll of Stress

I LOOK IN THE MIRROR AND SEE A YOUNGISH FACE. I turn a bit to discover a bald patch on the crown of my head....

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.

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, treatment and quality of life.