The Leukodystrophy Publications and Videos page includes valuable information developed through the LCN and shared at Hunter’s Hope meetings.
Please also visit our other Resource Library here. It is a library for affected families, medical professionals, scientists, and others with interest. It was created to provide easy access for the entire Leukodystrophy community and others who may benefit from the information and hope shared.
Krabbe Newborn Screening Publications
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.
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Webinar - Optimizing NBS for Krabbe Disease
This webinar recording from June 8, 2026, Optimizing Newborn Screening for Krabbe Disease: Psychosine Testing, Treatment Pathways, and Best Practices for State Programs, provides an overview of key considerations for newborn screening programs, public health laboratories, and clinical teams involved in Krabbe disease screening and follow-up.
The webinar features presentations from Dr. Joanne Kurtzberg of Duke University, Dr. Dietrich Matern of Mayo Clinic, and Dr. Joseph Orsini of the New York State Newborn Screening Laboratory at the Wadsworth Center. Speakers discuss psychosine testing, laboratory cutoffs, clinical decision-making, treatment pathways, and coordination between state newborn screening programs and specialized care teams. They also share practical insights and best practices to support timely, accurate, and effective responses to positive or concerning newborn screening results.
Clinical Practice Guidelines
Leukodystrophy Clinical Practice Guidelines (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.
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Continuing Medical Education - Krabbe NBS and Diagnosis
Learn from Krabbe Newborn Screening experts while earning CME credit. On February 1, 2023, Dr. Joanne Kurtzberg, Dr. Dietrich Matern, and Dr. Joseph Orsini presented the most current information about Krabbe NBS and best practices on interpreting screening results. CME credit is available through May 2, 2023.
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2025 Hunter's Hope Medical Symposium Presentations
View the presentations from the 2025 Medical Symposium at the link below.
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2024 Hunter's Hope Medical Symposium Presentations
View the presentations from the 2024 Medical Symposium at the link below.
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2023 Hunter's Hope Medical Symposium Presentations
View the presentations from the 2023 Medical Symposium at the link below.
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2022 Medical Symposium Presentations
These presentations were recorded at the 2022 Global Virtual Leukodystrophy Symposium.
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2021 Medical Symposium Presentations
These presentations were recorded at the 2021 Global Virtual Leukodystrophy Symposium.
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2020 Winter LCN Meeting Presentations
The following presentations were created and presented by LCN Care Coordinators and Family Advocates at the LCN 2020 Winter Meeting in Atlanta, GA. The purpose of the meeting was to share medical and family expertise in the various leukodystrophies.
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2020 Medical Symposium Presentations
These presentations were recorded at the 2020 Global Virtual Leukodystrophy Symposium.
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