Learn about the history of newborn screening for Krabbe Disease and the recommendations for states screening for Krabbe to ensure the best possible outcomes.
Newborn Screening for Krabbe Disease: Status Quo and Recommendations for Improvements
Archives
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.
Leukodystrophy Publications & Videos
The Leukodystrophy Publications and Videos section of our website includes valuable information developed through the LCN and shared at Hunter’s Hope meetings
Consensus Guidelines for Newborn Screening, Diagnosis and Treatment of Infantile Krabbe Disease
Consensus Guidelines for Newborn Screening, Diagnosis, and Treatment of Infantile Krabbe Disease
Family Attitudes Regarding Newborn Screening for Krabbe Disease
This is about Family Attitudes regarding Newborn Screening for Krabbe Disease resulting from a Survey of Leukodystrophy Registries.
Benefits of Newborn Screening and Hematopoietic Cell Transplant in Infantile Krabbe Disease
Infantile Krabbe Disease (IKD) can be treated with hematopoietic cell transplantation (HCT) if done during the first weeks of life before symptoms develop.
Krabbe NBS – A Family Guide
Learning your child received a positive newborn screening result can be scary and overwhelming. Although there is a lot of information to take in and process, this guide is here for you to use at your own pace. Our aim is to provide you with key information about Krabbe disease and newborn screening and to… Read more »
NBS Fact Sheet – Oklahoma
Saving Children’s Lives in Oklahoma through Timely, Equitable Access to Newborn Screening. Featuring the Abner Family.
LOKD NBS Guidelines
Later Onset Krabbe Disease(LOKD) Consensus recommendations for the classification and long-term follow up of infants who screen positive for Krabbe Disease.