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
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Help for Insurance Denials
Resources from the Patient Advocate Foundation for Insurance Denials. If your insurance plan refuses to approve or pay for a medical claim, including tests, procedures or specific care ordered by your doctor, you have guaranteed rights to appeal. These rights were expanded as a result of the Affordable Care Act.
Patient Advocate Foundation
Patient Advocate Foundation (PAF) is a national 501 (c)(3) non-profit organization which provides case management services and financial aid to Americans with chronic, life threatening and debilitating illnesses.
Nursing Care Medical Necessity Template
Template letter from an LCN Care Coordinator to help families obtain nursing care.
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 »