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Article History

Received: 16 December 2025

Accepted: 10 June 2026

First Online: 23 June 2026

Declarations

Ethics approval and consent to participate: The study was conducted in accordance with the Declaration of Helsinki and Council for International Organizations of Medical Sciences (CIOMS) International Ethical Guidelines and local regulations. The independent survey was reviewed by a central institutional review board (IRB) and determined to be exempt from IRB oversight.

Consent for publication: Not applicable.

Competing interests: PN has received research support from Alexion/AstraZeneca Rare Disease, argenx (in progress) Cabeletta Bio (in process), Patient Centered Outcomes Research Institute; served on advisory boards and/or consulted for Alexion/AstraZeneca Rare Disease, Amgen, argenx, Cartesian, CVS, Dianthus, ImmuneAbs, Immunovant, Janssen, Serono, UCB, Viridian and VOR; serves/served as Data Monitoring Committee Chair for argenx, NMD pharma and Sanofi; and receives royalties from Springer Nature. CT has nothing to disclose. JS is an employee of the EveryLife Foundation, which receives funding from the research sponsor for work unrelated to this research. SdR received grant funding from GSK, the National Institute of Mental Health (NIMH), the Patient-Centered Outcomes Research Institute (PCORI), and the Pharmaceutical Research Manufacturers of America (PhRMA) Foundation. CRamirez is cofounder and board treasurer for Own MG. AF is an employee of the Myasthenia Gravis Association, a member of the argenx Leadership Council, Rare Disease Connect in Neurology Steering Committee for UCB and has received consulting honoraria. NW, ACG, and EC are employees of Avalere, which received funding to conduct this research and consults with life sciences organizations. KSY is an employee of Alexion, AstraZeneca Rare Disease, holds stock or stock options in AstraZeneca, and holds stock in Takeda. MR was an employee of Alexion, Astrazeneca Rare Disease, at the time of analyses and holds stock or stock options in AstraZeneca. CRowe is an employee of Alexion, AstraZeneca Rare Disease, and holds stock or stock options in AstraZeneca. KGG has received honoraria from AcademicCME, Alexion, AstraZeneca Rare Disease, Amgen, argenx, Novartis, Springer, and UCB.