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
Downloadable resources
Patient Resources
CareConnectPSS — Personalized support services for patients
CareConnectPSS represents Sanofi Genzyme’s more than 35-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 patient's individual needs, a 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
External Resources
Advocacy groups*
Fabry Support and
Information Group
www.fabry.org
660-663-1355
National Fabry Disease Foundation (NFDF)
www.fabrydisease.org
800-651-9131
National Kidney
Foundation
www.kidney.org
855-653-2273
National Organization for
Rare Disorders (NORD)
www.rarediseases.org
800-999-6673
American Kidney Fund
www.kidneyfund.org/fabry
800-638-8299
*This listing is provided as a resource only and does not constitute an endorsement by Sanofi Genzyme of any particular organization or its programming. Additional resources on this topic may be available and should be explored. Sanofi Genzyme does not review or control the content of non-Sanofi Genzyme websites.
Contact Us
If you have any questions, please feel free to contact us.
