Hunter’s Hope is committed to ensuring that all infants with a positive screen for Krabbe Disease have the best possible outcomes. We are proud to partner with a group of NBS and Krabbe Disease experts to make continual advancements for Krabbe NBS.
Krabbe NBS Family Guide
Krabbe NBS Clinical Practice Guidelines (CPGs)
Consensus recommendations for Infants who Screen Positive for Krabbe Disease.
Benefits of Newborn Screening and Hematopoietic Cell Transplant in Infantile Krabbe Disease
Patient Perspectives on Krabbe Newborn Screening
Infantile Krabbe Disease Consensus Guidelines for NBS
American College of Medical Genetics (ACMG) ACT (ACTion) Sheets for Krabbe NBS
The ACMG ACT Sheets and their accompanying algorithms are a great resources for health care providers looking for information on genetic conditions (identified through newborn screening and beyond) to help inform clinical decision making. Developed by the American College of Medical Genetics and Genomics and the National Coordinating Center for the Regional Genetics Networks (NCC), ACMG ACT Sheets are available on the ACMG website. Given the rarity of many genetic conditions—ACT Sheets and algorithms are excellent refreshers on the conditions, diagnoses, and next steps for patients.