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Rare and Orphan Diseases

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Why Healing Still Begins with Relationship

Gil Bashe, Medika Life Editor -
When I discuss Healing the Sick Care System: Why People Matter with audiences, I expect nods of recognition acknowledging the mess and the hopelessness...

StuffThatWorks and The Marfan Foundation to Engage in Pilot Program

Medika Life -
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.

Reevaluating Ehlers-Danlos Syndrome: How Vascular EDS Patients Are Left Behind

Gil Bashe, Medika Life Editor -
EDS Subtyping May Not Be a Harmless Convention, But a Recipe for Patient Danger

Rare – Always Present and Never Forgotten

Julia Martinez -
The experience of attending Rare Disease Day at the National Institutes of Health (NIH) exceeded the confines of the definition for rare and instead should be more appropriately defined as extraordinary shares a new Medika author.

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