CareConnectPSS represents Sanofi Genzyme's more than 25-year commitment to supporting the rare disease community. Your CareConnectPSS team will work closely with you and your healthcare providers to give you the confidential and personalized support you need. We support each patient's unique Fabry disease journey with dedicated Patient Education Liaisons and Case Managers who can provide one-on-one assistance through a range of resources, programs, and other support offerings.
Your CareConnectPSS Patient Education Liaison (also called a “PEL”) can provide disease and treatment education on topics such as family trees, genetic inheritance, and genetic testing for your family members, if needed. Your PEL can also provide other resources for disease awareness to support you and your family.REQUEST A CONSULTATION
Our CareConnectPSS Case Manager can provide insurance support, from claims to billing assistance, as well as assistance with connecting to resources that can help with out-of-pocket costs. Additionally, your Case Manager can assist with insurance changes related to your employment status, age, or marital/dependency status.
Information you provide will always be kept confidential.
If you reside in the United States and would like to speak with a CareConnectPSS Case Manager in your area, please call:
Spanish-speaking Case Managers as well as interpreters for other languages are available.
There is a lot to learn about Fabry disease. We offer a number of free brochures on a variety of topics that may be of interest to you.
Sanofi Genzyme is committed to helping meet the needs of people who are living with Fabry disease. As part of this commitment, we provide services for those who have Fabry disease and their families. From providing disease education to helping patients create a Medical Family Tree to navigating insurance issues, we are here to help. Learn more about CareConnectPSS Support Services >There are also online resources available to help.
As awareness of Fabry disease grows, so does the number of groups and websites that support the Fabry community and others living with genetic disorders. Here are some organizations that offer support and information to people living with Fabry disease and their caregivers.
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.
Fabry disease videos
Learn more about other patients' experiences with Fabry disease. Explore our video library >
Help advance the understanding of Fabry disease. Learn more >
Communicating with family members about a Fabry disease diagnosis can be challenging. We have created a sample letter to help you get started. You can use this sample letter to get suggestions for how to write your own message to your family members. Or simply email the letter we have provided. When and how to share your diagnosis is something you may wish to discuss with your treating physician or your CareConnectPSS Patient Education Liaison.