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Rare and Orphan Diseases

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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.

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

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.

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.