"People living with Pompe, we're not alone, we're in this together..."

~ Lecita - A Pompe patient managing her disease while balancing motherhood

Patients and Caregivers

What is Pompe disease?

Pompe disease is a rare inherited neuromuscular disorder that causes muscle weakness in patients who inherit a defective gene from their parents.

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Managing Pompe

Pompe disease has a widely variable age of symptom onset and disease progression. It is best managed by a multi- disciplinary team led by a physician with experience treating this disorder.

Manage Pompe

Signs & Symptoms

The signs and symptoms of Pompe disease vary widely and may first emerge at any age from infancy to late adulthood. As a result, the disease can affect people differently.

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Resources & Support

As a partner in the effort to manage the challenges of living with Pompe disease, Genzyme offers a wide range of services to physicians and patients, ranging from brochures to insurance information.

View available resources


Pompe InCommon

A program dedicated to providing people who have Pompe disease — and those who are care for them — with helpful information, inspiring stories, and insights about living with Pompe.

Visit Pompe InCommon

Pompe Registry

Find out about the Pompe Registry, a program that tracks information about patients’ symptoms and experiences in order to improve understanding of Pompe disease.

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