Learning About Pompe
Managing Pompe
Treatment Options
Standards of CareStandards of Care
Standards of care are guidelines for healthcare providers to follow when diagnosing and treating diseases. These guidelines can help ensure earlier diagnosis and aid in managing a disease like Pompe. They can also help patients receive medical care tailored to the disease and get better follow-up care.
Two professional groups are working on developing standards of care for Pompe disease. The American College of Medical Genetics (ACMG) has proposed draft guidelines for screening inherited metabolic disorders in newborns and children. The European Neuromuscular Center (ENMC) is developing standards of care to diagnose, monitor, and manage Pompe disease in infants, children, and adults.
