Twenty years of the Fabry Outcome Survey (FOS): insights, achievements, and lessons learned from a global patient registry.
Michael BeckUma RamaswamiElizabeth Hernberg-StåhlDerralynn A HughesChristoph KampmannAtul B MehtaKathleen NichollsDau-Ming NiuGuillem Pintos-MorellRicardo ReisinMichael L WestJörn SchenkChristina AnagnostopoulouJaco BothaRoberto GiuglianiPublished in: Orphanet journal of rare diseases (2022)
FOS over the last 20 years has substantially increased the scientific knowledge around improved patient management of FD and continues to expand our understanding of this rare disease.