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The survey was conducted independently and did not have external financial support.Dr. Alvarado reports no conflicts of interest concerning this manuscript.Dr. Lampe has received travel support, speaker fees, and honoraria from Alexion, Actelion, BioMarin, Genzyme Sanofi, and Shire.Dr. White has received travel support, research support, and honoraria from BioMarin, travel support from Medicrea, and royalties from UptoDate.com.Dr. Solano Villareal has received speaking fees, honoraria, and travel support to attend scientific meetings from BioMarin Pharmaceutical.Prof. Giugliani declares board membership for Amicus, BioMarin, Lysogene, Sanofi-Genzyme, and Shire; consultancy for BioMarin, Sanofi-Genzyme, and Shire; grants from Actelion, BioMarin, Sanofi-Genzyme, and Shire; payments for lectures from Actelion, BioMarin, Sanofi-Genzyme, and Shire; and payments for travel\/accommodation\/meeting expenses from Actelion, Amicus, BioMarin, Sanofi-Genzyme, and Shire.Dr. Harmatz declares board membership for BioMarin and PTC; consultancy for BioMarin, Shire, Genzyme, PTC, Chiesi, Armagen, Inventiva, REGENXBIO, Sangamo, and Alexion; grants from BioMarin; payments for lectures from BioMarin, Shire, Genzyme, Alexion, and PTC; and payments for travel\/accommodation\/meeting expenses from BioMarin, Genzyme, Chiesi, and Armagen.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of interest"}},{"value":"This article does not contain any studies with human participants or animals performed by any of the authors.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical approval"}}]}}