Facebook Groups Can Provide Support for Patients with Rare Diseases and Reveal Truths About the Secret Lives of Patients.
作者信息
Gaddy Anna, Topf Joel
机构信息
Indiana University School of Medicine, Indianapolis, Indiana, USA.
Oakland University William Beaumont School of Medicine, Rochester, Michigan, USA.
出版信息
Kidney Int Rep. 2021 Apr 1;6(5):1205-1207. doi: 10.1016/j.ekir.2021.03.890. eCollection 2021 May.
Abstract
摘要
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3
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Clin J Am Soc Nephrol. 2019 Apr 5;14(4):623-625. doi: 10.2215/CJN.10380818. Epub 2019 Feb 27.
4
Living with a rare disorder: a systematic review of the qualitative literature.
Mol Genet Genomic Med. 2017 Nov;5(6):758-773. doi: 10.1002/mgg3.315. Epub 2017 Jul 23.
5
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6
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