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Article

Genetics' influence on patient experiences with a rare chronic disorder: a photovoice study of living with alpha-1 antitrypsin deficiency.

The Nursing clinics of North America - 1 Dec 2013

Williams Pamela Holtzclaw, Shore Lucinda, Sineath Marvin, Quill Jim, Warner Barbara, Keith Jamila, Walker Deirdre, Wienke Sara, Flavin Susan, Strange Charlie

Abstract excerpt

Patients with rare chronic disorders and their caregivers increasingly form communities to support and exchange social experiences. Because up to 10% of the United States population is affected by one of 5000 to 6000 rare disorders, efforts to understand the individuals and affected communities are important. This study was conducted using community-based participatory research approaches within a community of...

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Methodology Data sources Editorial policy Privacy About Contact Helena Bioinformatics

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Source

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Identifiers

PMID: 24295190
DOI: 10.1016/j.cnur.2013.09.008
PMCID: PMC4437222

Provenance

PubMed metadata and Literature Corpus relationships. Corpus snapshot updated 7 Sept 2026. Manifest publication-graph-cohort-2026-09-08.1.

Source receipt: pubmed, retrieved 7 Sept 2026.

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