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MPSI Disease Treatment Information for Patients and FamiliesMPSI Disease Treatment Information for Health Care Providers
Patients & Care Givers Overview
About MPS I
Treatment Options
Patient Stories
Living with MPS I
Explaining MPS I
MPS I and the Workplace
Talking to Your Doctor
Traveling
Parental Support
The MPS I Registry
Resources & Support

Patient Journal

Just as MPS I affects different people differently; responses to treatment will vary from person to person as well. Nobody cares more about you or your child's treatment more than you do. Because you will be seeing multiple doctors, it's vital to maintain a thorough record of medical visits, treatments, appointments, and impressions over time. Download the Patient Journal to help play a role in monitoring your own progress by keeping track of tests your doctor has ordered for you.

The Patient Journal provides a recommended schedule of assessments, allows you to monitor the results of your physical and laboratory tests, and includes space for your and your doctor’s comments ─ all in one convenient place. Open communication with your team of healthcare specialists is important so you can receive appropriate care.

Did you know...
The MPS I Registry is a worldwide database that tracks health-related information for people with MPS I, allowing doctors and health care professionals to better understand and treat the disorder.
Find Out More
Watch Video
Alicia is a 16-year-old with MPS I who was diagnosed 10 years ago. Watch Alicia’s story to find out how she is handling life as a teenager living with MPS I.
Watch the Video
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