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Article History

Received: 12 July 2019

Accepted: 7 November 2019

First Online: 4 December 2019

Ethics approval and consent to participate

: This project was conducted in compliance with the French law regulating Research Involving Human Subjects (Law n° 2012–300 March 3, 2012). The research design is excluded from French Ethics Committee approval according to article 2 decree n° 2017–884 May 9, 2017.All participants received clear and detailed information about their involvement in developing this questionnaire, and their rights as a participant. All participants were informed before providing their informed consent and participating in any phase of the process.

: As part of the information letter, all participants were made aware that the results of this research may be published in a peer-reviewed medical journal (no individual data, only in an aggregate form). They all consented to have their data used in an aggregate form for publication purpose.

: The authors declare the following financial and non-financial competing interests: <b>E.N</b>: received honoraria from Amicus Therapeutics, Travel Expenses from Amicus Therapeutics, Sanofi and Shire. <b>B.D</b>: Advisory Board; Amicus Therapeutics. Travel Expenses; Sanofi. <b>N.B</b>: No conflicting interests to report. <b>A.F</b>: received honoraria for Advisory Board; Roles for Self; Amicus Therapeutics. Contracted Research; Roles for Self; Biomarin, Sanofi-Genzyme. Honoraria; Roles for Self; Amicus Therapeutics, Biomarin, Sanofi-Genzyme. Travel Expenses; Roles for Self; Amicus Therapeutics, Biomarin, Sanofi-Genzyme. <b>P.R:</b> Advisory Board; Roles for Self; Amicus Therapeutics. Consulting Fees; Roles for Self; Amicus Therapeutics, Idorsia. Contracted Research; Roles for Self; Alexion. Salaried Employee; Roles for Self; Sorbonne University, European Research Council. Honoraria; Roles for Self; Idorsia, Amgen. Travel Expenses; Roles for Self; Genzyme, International Society for Neurochemistry. <b>D.G</b>: No conflicting interests to report. <b>D.L</b>: Sanofi-Genzyme: contract/honorarium. Amicus Therapeutics, Sanofi-Genzyme: advisory board participation congress. <b>S. B</b> received: Consulting Fees; Roles for Self; Amicus Therapeutics, Ultragenyx. Contracted Research; Roles for Self; Shire, Sanofi-Genzyme, Ultragenyx, Alexion. Travel Expenses; Roles for Self; Amicus Therapeutics, Sanofi-Genzyme, Shire. <b>A.H</b>: Advisory Board; Roles for Self; Novartis. Consulting Fees; Roles for Self; Pfizer, Amicus Therapeutics, Sanofi-Genzyme, Alnylam. Contracted Research; Roles for Self; Amicus Therapeutics, Genzyme, Gilead. Honoraria; Roles for Self; Pfizer, Amicus Therapeutics, Sanofi-Genzyme, Novartis. <b>F.D-S</b>: employee Amicus Therapeutics. <b>V.D-A</b>: subcontracted by Amicus Therapeutics. <b>D.P.G</b>: received travel grants and speaker honoraria from Amicus Therapeutics, Sanofi and Takeda. <b>O.L</b>: Travel grants and speaker honoraria from: Amicus Therapeutics, Genzyme/Sanofi, and Shire.