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Article History

Received: 21 May 2026

Accepted: 11 August 2026

First Online: 13 August 2026

Declarations

Ethics approval and consent to participate: Our online survey was conducted using a self-administered anonymous questionnaire and did not collect any personally identifiable information from participants. Although anonymous questionnaire surveys may be exempt from ethical review under the Japanese Ethical Guidelines for Medical and Biological Research Involving Human Subjects, this study was reviewed and approved by the Ethics Review Committee of the Institute of Medical Science, The University of Tokyo, because it targeted patients and families affected by rare diseases (approval number: 2021-67-1222). The survey implementation plan also complied with the research ethics guidelines of the Japan Sociological Society. Before participating, respondents read an explanation of the study purpose and the intended use of the data on the survey website and indicated their consent by checking the consent box.

Consent for publication: Not applicable. The manuscript does not contain any personally identifiable information.

Competing interests: The authors declare no competing interests.