Pompe Educational Resources

NewSTEPs has compiled educational resources that can be used to support Pompe newborn screening (NBS) efforts in states and regions.

• The American College of Medical Genetics (ACMG) has created an ACTion (ACT) sheet for healthcare professionals which describes actions needing to be taken, communication for families, and follow-up advice on screen positive infants.
• The Baby’s First Test website provides information for parents on all newborn screening disorders including Pompe disease.
• A Molecular Genetics and Metabolism journal article on Missouri’s first year experience with pilot screening for Pompe disease
• Recordings of a February 2013 a webinar series co-sponsored by the APHL Quality Assurance/Quality Control Subcommittee and the CDC NBS Quality Assurance Program on Pompe Disease 101
• The New York Mid-Atlantic Consortium (NYMAC) has compiled a list of video recordings regarding new disorder implementation.
• New York State's NBS website has brochures available that provide information for parents about Pompe disease, and are conveniently translated in 7 languages. These brochures can be found under "Educational materials" after the option to expand the Pompe section is selected.