Understanding Adult Participant and Parent Empowerment Prior to Evaluation in the Undiagnosed Diseases Network

The burden of living with an undiagnosed condition is high and includes physical and emotional suffering, frustrations, and uncertainty. For patients and families experiencing these stressors, higher levels of empowerment may be associated with better outcomes. Thus, it is important to understand th...

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Bibliografische gegevens
Gepubliceerd in:J Genet Couns
Hoofdauteurs: Palmer, Christina G. S., McConkie-Rosell, Allyn, Holm, Ingrid A., LeBlanc, Kimberly, Sinsheimer, Janet S., Briere, Lauren C., Dorrani, Naghmeh, Herzog, Matthew R., Lincoln, Sharyn, Schoch, Kelly, Spillmann, Rebecca C., Brokamp, Elly
Formaat: Artigo
Taal:Inglês
Gepubliceerd in: Springer US 2018
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Original Research
Online toegang:https://ncbi.nlm.nih.gov/pmc/articles/PMC6132569/
https://ncbi.nlm.nih.gov/pubmed/29497923
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1007/s10897-018-0228-6
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