‘It would be much easier if we were just quiet and disappeared’: Parents silenced in the experience of caring for children with rare diseases

Health expectations : an international journal of public participation in health care and health policy, 2019-12, Vol.22 (6), p.1251-1259 [Peer Reviewed Journal]

2019 The Authors published by John Wiley & Sons Ltd ;2019 The Authors Health Expectations published by John Wiley & Sons Ltd. ;COPYRIGHT 2019 John Wiley & Sons, Inc. ;2019. This work is published under http://creativecommons.org/licenses/by/4.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License. ;ISSN: 1369-6513 ;EISSN: 1369-7625 ;DOI: 10.1111/hex.12958 ;PMID: 31466132

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