Clinical Practice Guidelines (CPGs)
Leukodystrophy CPGs establish a published, peer-reviewed standard of care to ensure that individuals with Leukodystrophy have the best possible medical care, improving length and quality of life.
Newborn Screening (NBS)
Consensus recommendations for Infants who Screen Positive for Krabbe Disease
Infantile Krabbe Disease Consensus Guidelines for NBS
Patient Perspectives on Krabbe Newborn Screening
Benefits of Newborn Screening and Hematopoietic Cell Transplant in Infantile Krabbe Disease
Diagnosis
Early Signs and Symptoms of Leukodystrophies: A Case-Based Guide
Treatment
Hematopoietic Stem Cell Transplantation to Treat Leukodystrophies
Symptom Management
Neurology
Practical Approaches and Knowledge Gaps in the Care for Children with Leukodystrophies
Musculoskeletal
Coming soon…
Pulmonary
Coming soon…