Understanding information sharing about rare diseases: an evaluation of the NIH's website on AATD

Introduction: People with rare diseases have difficulty accessing high quality information about their conditions, which impedes their ability to be engaged patients. Federal agencies such as the National Institutes of Health (NIH) have created websites to disseminate disease-related information. Th...

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Bibliographic Details

Published in:	Journal of communication in healthcare Vol. 11; no. 2; pp. 128 - 139
Main Authors:	Zhu, Xun, Smith, Rachel A., Parrott, Roxanne L., Worthington, Amber K.
Format:	Journal Article
Language:	English
Published:	Taylor & Francis 03-04-2018
Subjects:	genetic determinism health websites information sharing patient engagement rare diseases spirituality
Online Access:	Get full text
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