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Direct linkFinn, Symma – ProQuest LLC, 2008
We investigated empowerment in the Alpha-1 Antitrypsin Deficiency (Alpha-1) community, a rare, genetic disease network in the United States. The research was motivated by nine years of observations in the community. After observing what seemed to be a heightened amount of activism among Alpha-1 community members, I had hypothesized that this…
Descriptors: Genetic Disorders, Empowerment, Physicians, Focus Groups
