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.
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
This is about Family Attitudes regarding Newborn Screening for Krabbe Disease resulting from a Survey of Leukodystrophy Registries.
Infantile Krabbe Disease (IKD) can be treated with hematopoietic cell transplantation (HCT) if done during the first weeks of life before symptoms develop.
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 »
Saving Children’s Lives in Oklahoma through Timely, Equitable Access to Newborn Screening. Featuring the Abner Family.
Later Onset Krabbe Disease(LOKD) Consensus recommendations for the classification and long-term follow up of infants who screen positive for Krabbe Disease.