The International Collaborative Group (ICGG) Gaucher Registry

The Gaucher Registry (sponsored by Sanofi Genzyme) is the world’s largest cooperative observational study on Gaucher disease. The International Collaborative Gaucher Group (ICGG) established the registry in 1991 as a longitudinal database tracking outcomes of routine clinical practice.

  • All patients with a confirmed diagnosis of Gaucher disease, regardless of treatment modality, are eligible for inclusion
  • By enrolling patients in the registry, participating physicians will receive patient-specific reports to monitor disease status

Data from the Gaucher Registry provides insight into Gaucher disease. Publications based on this data have helped increase understanding of Gaucher disease, its natural history, diagnosis, treatment, and management as well as bone disease, pediatric presentation, and genotypes. The Gaucher Registry maintains its integrity by a commitment to patient privacy and confidentiality, as well as a commitment to the quality of the data.

Reporting. Collaborating. Advancing. Help to improve the quality of care for patients with Gaucher disease. Join the Gaucher Registry.

Finding a Gaucher Disease Specialist

You can use the National Gaucher Foundation's treatment finder to find a Gaucher disease specialist.


CareConnectPSS, personalized support services for patients, represents Sanofi Genzyme’s more than 35-year commitment to supporting the rare disease community. CareConnectPSS is designed to support each patient’s unique journey.

Our range of support to help patients managing living with a rare disease:
  • Programs and other offerings on a range of disease, treatment, and support topics

  • Dedicated CareConnectPSS Case Managers and Patient Education Liaisons

  • Disease-specific information, including genetic education and other resources

  • Care coordination for treatment

  • Assistance with understanding new or changing insurance as well as resources to help with out-of-pocket costs

For more information, visit us at

Access to these and other services is voluntary, and your patients are not obligated to begin treatment if they contact us. You and your patients make all treatment-related decisions, and most importantly the privacy and security of their personal information are always protected.

Sanofi Genzyme CareConnectPSS Copay Assistance Program The Sanofi Genzyme Copay Assistance Program helps eligible individuals in the United States who are prescribed a Sanofi Genzyme treatment with their drug related out-of-pocket expenses, including copays, co-insurance, and deductibles, regardless of financial status. This program is sponsored by Sanofi Genzyme.

Is it Gaucher disease?

Perform a blood-based (glucocerebrosidase) enzyme assay.

Test to know

Know the signs and symptoms

Identify Gaucher disease.

Learn more