Where rare disease families find and share resources.

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.

Krabbe Newborn Screening Publications

Positive Screen?

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

Kids Leukodystrophy Guide

“Just for Kids:  This Thing Called Leukodystrophy” This is a special book written for kids by kids.

Helpful Resources

There are many great organizations and resources available for families caring for a child with a Leukodystrophy.