Living with a rare disease: Why lived experience must shape research

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What the source reports

by Gemma Whyatt, Jodi Whitehouse Rare diseases are often defined by numbers and clinical perspectives, a narrative that needs re-writing. Drawing on decades of patient advocacy, two women living with the rare condition Congenital Melanocytic Naevus argue that lived experience must shape research from the outset, and discuss how genuine patient-researcher partnership transforms science, care and identity.

In this Perspective, Gemma Whyatt and Jodi Whitehouse—two women living with the rare condition Congenital Melanocytic Naevus—outline why lived experience must shape rare disease research…

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Source & verification

Primary source: PLOS Medicine · September 18, 2026

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