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.

Leukodystrophy Guide for Kids

Download this guide all about Leukodystrophies made just for kids!

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


Coming Soon…


Hematopoietic Stem Cell Transplantation to Treat Leukodystrophies

Symptom Management


Practical Approaches and Knowledge Gaps in the Care for Children with Leukodystrophies

Family Guide


Coming soon…


Coming soon…

Presentations from the 2020 Hunter’s Hope Virtual Symposium

Click Here to view presentations from the 2020 Hunter’s Hope Medical Symposium

Click Here to view presentations for the 2020 Hunter’s Hope Family Symposium

Leukodystrophy Disease Information from
2020 LCN Winter Meeting

Click here to view presentations about various Leukodystrophies. These presentations were created by LCN Care Coordinators and Family Advocates for the LCN 2020 Winter Meeting in Atlanta, GA.