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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Bibliografiska uppgifter
I publikationen:J Genet Couns
Huvudupphovsmän: 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
Materialtyp: Artigo
Språk:Inglês
Publicerad: Springer US 2018
Ämnen:
Original Research
Länkar: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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