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“If not me, who?”: Awareness- and Self-Advocacy-Related Experiences of Adults With Diverse Rare Disorders

Emily F. Plackowski, Auteur ; Kathleen R. Bogart, Auteur |

Dans Qualitative health research (Vol. 33, n°1-2, January 2023)

"In a two-study project, researchers used qualitative methods and inductive thematic analyses to investigate the lived awareness- and advocacy-related experiences of 27 adults with over 35 different rare diseases, disorders, or disabilities (RDs[...]

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