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 (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.
Template letter from an LCN Care Coordinator to help families obtain nursing care.
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
“Just for Kids: This Thing Called Leukodystrophy” This is a special book written for kids by kids.
There are many great organizations and resources available for families caring for a child with a Leukodystrophy.
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.