“When the kids were first diagnosed and we were told we would have a Case Manager, I just thought, 'You know what, I can do this on my own.' Then you find out it is bigger than you are.”
— Parent of two children living with Pompe disease
Genzyme believes in empowering patients with the knowledge to fully understand their conditions and the broader issues that affect their healthcare decisions. But because we focus on extremely rare diseases, it's not always easy for the patients we serve to find the information they need.
That's why we're committed to developing a range of educational materials that support the lysosomal storage disorder (LSD) community. Below you'll find links to key pages within our comprehensive disease websites, which provide a wealth of information. And once you register for an online Support Services account, you'll get a personalized library of additional links, articles, and other resources relevant to your specific situation and needs.
Gaucher Care Website
Gaucher disease is a chronic, progressive, inherited genetic disorder caused by insufficient levels of a particular enzyme. As a result, a fatty material accumulates in the body and can cause mild to severe symptoms. Click on the links below to learn more about Gaucher disease, its signs and symptoms, and how it's passed on through families. Hear from other Gaucher patients, get ideas on how to cope, and learn about treatment options and supportive care.
Fabry Community Website
Fabry disease is a rare inherited disorder that prevents the body from producing enough of an enzyme called alpha-galactosidase A, or alpha-GAL. Click on the links below to learn more about Fabry disease, its signs and symptoms, how it's passed on through families, and resources for living with Fabry disease.
Pompe Community Website
Pompe disease is a neuromuscular disorder, which causes muscle weakness in people of all ages, but the symptoms vary widely from person to person. Click on the links below to learn more about the signs and symptoms, diagnosis and testing, and strategies and resources for living with Pompe disease.
MPS I Website
MPS I is a rare genetic disorder that occurs in about 1 in every 100,000 births. Patients with MPS I disease can experience a wide range of symptoms with variable degrees of severity. Click on the links below to learn more about MPS I disease, get tips on how to cope, and access additional resource and support.
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