Giving patients a voice in rare disease research

Rare diseases and the diagnostic odyssey

Patients with undiagnosed rare diseases often undergo a long, stressful and costly testing process.  This is called the ‘diagnostic odyssey.’  Standard testing involves numerous tests, missed diagnoses, and considerable stress and uncertainty for affected individuals and families.  On average, it takes 5.6 years to…

Published by HERU, University of Aberdeen

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