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Article History

Received: 5 December 2023

Accepted: 15 May 2025

First Online: 16 June 2025

Declarations

:

: All participants of the study provided electronic consent prior to starting the survey. This study was submitted for institutional review board approval and deemed exempt from review.

: Not applicable.

: EW had disclosures with Sanofi, Idorsia, Amicus, Chiesi, Protalix, Walking Fish Therapeutics, Spark Therapeutics, Natera, and DaVita. DL is chair of the North American Fabry Registry Board and provides consultations for Chiesi, Sanofi, and Spark Therapeutics. She is also an investigator/coordinator in clinical trials sponsored by 4DMT, Amicus, Chiesi, Protalix, Sangamo, Sanofi, and Takeda-Shire. She is also a cofounder of ThinkGenetic, Inc. These activities were monitored and found to be compliant with the conflict-of-interest policies at the Emory University School of Medicine. IW was on an assignment at Sanofi through Integrated Resources at the time of study completion; currently, he is an employee of Evidentia Dental Research, Canada. CB and JJ are the Fabry Support & Information Group employees and provide participant outreach and recruitment support. PD and NL are employees of Sanofi and stockholders in the company. JK was an employee of Sanofi at the time this study was conducted; currently, he is an employee of Moderna.