Ethics approval and consent to participate

The study complied with the reference methodology (MR004) of the French Data Protection Authority, was approved by Ethics committee (CPPRB/ 87–98) and the CNIL (National Commission for Information Technology and Civil Liberties) (Authorization n°996002).

Consent for publication

The study protocol conforms to the ethical guidelines of the 1975 Declaration of Helsinki, written informed consent was obtained from each patient, and the study complied with the reference methodology (MR004) of the French Data Protection Authority (CNIL).

Competing interests

PC reports personal fees for consultancies, outside the present work, for Amicus, Bristol Myers Squibb, Owkins, Pfizer, Servier and Sanofi. AP reports personal fees for consultancies, outside the present work, for Amicus. PR reports personal fees for consultancies, outside the present work, for Amicus, Bristol Myers Squibb, Cytokinetic, Alnylam, Pfizer, Sanofi. KN reports personal fees for consultancies, outside the present work, for Sanofi, Amicus, Takeda, and Chiesi JR reports hotel/travel expenses, outside the present work, from Amicus Therapeutics. AB reports personal fees for two medical education sessions on Fabry disease in 2018, outside the present work, for Amicus. FK, FA, ED, CB, PD, LF, AT, BI, LL, EG, JP, RI, NM, JP, BF, CC, PR declare that they have no competing interests.