Provider resources

Sanofi Genzyme Medical Information

Sanofi Genzyme's Medical Information Department can provide Information on diagnostic testing, pharmacovigilance/safety, antibody/plasma GL-3 testing, and Fabry disease.

Please call 8 AM until 6 PM EST, Monday through Friday:

1-800-745-4447, option 2 (toll-free)
1-617-768-9000, option 2

submit a medical question
 

 

Patient Resources

CareConnectPSS — Personalized support services for patients

CareConnectPSS represents Sanofi Genzyme’s more than 25-year commitment to supporting the rare disease community. This commitment includes building collaborative partnerships with patients, caregivers, and family members to help overcome challenges related to living with a rare disease. CareConnectPSS is designed to support each patient’s unique journey through dedicated Case Managers and Patient Education Liaisons who provide one-on-one assistance through a range of resources, programs, and other support offerings.

Depending on your individual needs, your CareConnectPSS Team of experts can assist with the following:

  • CareConnectPSS Case Managers can provide assistance with health insurance coverage, treatment planning, and care coordination with your patient's health care providers, including prior authorization or matters related to claims, billing, and out-of-pocket insurance costs. Additionally, your patient's Case Manager can assist with insurance changes related to your patient's employment status, age, or marital/ dependency status. Your patient's Case Manager can also assist with treatment-site changes to accommodate moves or vacations, as well as arrange drug acquisition for in-center and home infusions.
  • CareConnectPSS Patient Education Liaisons (also called “PEL”) can provide disease and treatment education on topics such as family trees, genetic inheritance, and genetic testing for your patient and their family members, if needed. Your patient's PEL can also provide other resources for disease awareness to support your patient and their family.

Whether your patient's needs are large or small, your patient's CareConnectPSS Team will work closely with them to provide the confidential support they need. To learn more about our range of support offerings, your patient can reach their CareConnectPSS Case Manager at 1-800-745-4447, and select Option 3, or email us at Info@CareConnectPSS.com.

 

 

Patient website

Sanofi Genzyme is committed to providing you with materials to help educate your patients about lysosomal storage disorders. A variety of patient educational materials are available to help patients understand Fabry disease, its symptoms, and management. 

Fabry Registry

Overview

The Fabry Registry is an ongoing, observational database that tracks the natural history and outcomes of patients with Fabry disease. The Fabry Registry contains data from over 5000 patients from more than 50 countries worldwide. All Fabry disease patients are eligible for enrollment irrespective of their treatment status, and all physicians managing patients with Fabry disease are encouraged to participate in the Fabry Registry.

The Fabry Registry is a global outcomes assessment and disease management program that compiles patient outcomes data from routine clinical practice to provide the medical community with resources to help optimize patient care. The Fabry Registry provides a repository that allows for the exchange of information and aggregate data to facilitate clinical decision-making and data reports, and serves as a vehicle for collaborative studies. 

For more information on the Fabry Registry, please visit the Registry website or call toll-free

800-745-4447, ext. 15500

For more information, please visit the registry website

External Resources

Advocacy groups*

Fabry Support and Information Group

National Fabry Disease Foundation (NFDF)

National Kidney Foundation

National Organization for Rare Disorders (NORD)

*Note that the opinions expressed by the organizations above do not necessarily reflect the views of Sanofi Genzyme. Sanofi Genzyme does not maintain and is not responsible for the content of communications for the listed organizations or their websites. 
This is not intended to be a comprehensive list of Fabry disease support organizations. Sanofi Genzyme does not review or control the content of non-Sanofi Genzyme websites. These listings do not constitute an endorsement by Sanofi Genzyme of information provided by any other organizations.

Contact Us

If you have any questions, please feel free to contact us.