That eagle covering me: Transitioning and connected autonomy for emerging adults with cystinosis

  • Doyle M
  • Werner-Lin A
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Abstract

Introduction Nephropathic cystinosis is a rare autosomal-recessive metabolic disorder with an estimated prevalence of 1 case per 100,000 to 200,000 live births [1]. There are believed to be 500 nephropathic [...]

Author-supplied keywords

  • Adherence
  • Cystinosis
  • Emerging adulthood
  • Grounded theory
  • Transitioning

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Authors

  • Maya Doyle

  • Allison Werner-Lin

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