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This is not an exhaustive list of labs, or an endorsement of any one lab. Other testing options can be found at www.concertgenetics.com (free login required) or www.ncbi.nlm.nih.gov/gtr. 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. Tests may not be available in all states. Please contact the laboratory to confirm test availability, sample shipping information, and all other logistics.

 


Websites

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.

Concert Genetics (free login required): www.concertgenetics.com

Genetic Home Reference: https://ghr.nlm.nih.gov/condition/fabry-disease

Fabry Support and Information Group: www.fabry.org

National Fabry Disease Foundation: https://www.fabrydisease.org/index.php

National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/fabry-disease/


Patient Registry

The Fabry Registry, a program sponsored and administered by Sanofi Genzyme, was created in 2001 to gather information to improve the understanding and evaluate the treatment of Fabry disease. It is the largest patient registry dedicated to Fabry disease.

Because Fabry disease is rare, it can be difficult to collect information on how the disease and its treatment affect different people. The Fabry Registry is a global, observational database for gathering this critical information. All people who have Fabry disease are eligible to participate, regardless of whether they are on treatment.

For more information on The Fabry Registry, visit our website at https://www.registrynxt.com/.

 

 

 

 

Last Updated: Mar 13, 2020
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