01
Understand natural history
Observe how Fabry disease presents and changes across life stages and organ systems.
Restored informational archive
Knowledge grows when experiences are shared.
The Fabry Registry was created to help the medical community better understand the variability, progression, and long-term outcomes of Fabry disease across ages, sexes, regions, and treatment status.
Observational programInternational participationLongitudinal evidence
One registry, multiple perspectives
Built around shared learning.
The historical Registry connected patients, treating physicians, scientific advisors, and researchers through structured collection of routine clinical outcomes.
02
Recognize variability
Examine differences among males, females, pediatric patients, regions, and clinical phenotypes.
03
Monitor outcomes
Use longitudinal routine-care information to study major events and long-term treatment effects.
04
Improve shared knowledge
Generate analyses, publications, and assessment guidance for the Fabry community.
0Registry enrollment began
0Participants reported by Sanofi in 2021
0Countries represented in a 2021 overview
0Long-term collaboration
A multisystem perspective
Monitoring follows the whole person—not a single organ.
Fabry disease can affect multiple systems. Historical Registry guidance organized observation across general health, renal, cardiac, cerebrovascular, neurologic, gastrointestinal, pain, skin, respiratory, eye, and quality-of-life domains.
Explore assessment domains
Choose your path
Information for every audience.
PF
Patients & families
Learn about voluntary participation, consent, privacy, and questions to discuss with a treating physician.
Patient information →HP
Healthcare professionals
Review historical participation, assessment, and research principles for clinicians.
Professional information →RL
Research library
Browse restored publication themes, historical resources, and authoritative current links.
Research & publications →Looking for current enrollment or study details?
This restored site does not operate the Registry. Use official current Sanofi and ClinicalTrials.gov sources or speak with your treating physician.