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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.

MPS Society: http://www.mpssociety.org/

National Organization for Rare Disorders: https://rarediseases.org/rare-diseases/mucopolysaccharidosis-type-i/

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

Genetic Home Reference: https://ghr.nlm.nih.gov/condition/mucopolysaccharidosis-type-i


Patient Registry

The goal of the MPS I Registry is to collect clinical data on people with MPS I disease around the world in an effort to help healthcare professionals better understand MPS I disease and its management. Specifically, the Registry tracks information on patient demographics, disease characteristics, treatment goals and outcomes.

Within your individual practice, the Registry’s patient case report (PCR) section offers a valuable tool that allows you to monitor each of your patient’s disease progress and response to therapy. The reports graphically summarize the changes in clinical parameters such as organ volume over time and responses to disease management.

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

 

 

 

 

Last Updated: Mar 13, 2020
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