Pompe disease

Organizations

Is there information available for caregivers of people with Pompe disease?

Pompe disease not only affects people affected with it, but their loved ones, too. It is important for caregivers of those with Pompe disease to take care of themselves as well. Schools should have special accommodations available for kids with Pompe. Below is the link for a teacher's guide to neuromuscular diseases in general (which includes Pompe disease). In-home nursing care may be available through health insurance plans. Genetic Alliance has resources available to help you advocate for yourself and your child.

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