Rare Disease

Purpose at the Center: Craig Martin’s “Rare” Commitment to Biopharma and Patients

Craig Martin is a strategic chameleon in health innovation. He is equally at home in boardrooms, nonprofit leadership, consulting and…

4 months ago

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…

6 months ago

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?

11 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,…

1 year 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

1 year 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.…

1 year 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

1 year 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.

1 year 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,…

1 year ago

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