Improving the lives of children by working to promote the expansion of newborn screening, and to further education, awareness and research of Krabbe disease and Cystic Fibrosis to provide a better treatment and a cure.
Krabbe disease is a rare, inherited degenerative disorder of the central and peripheral nervous systems. Krabbe disease is one of a group of genetic disorders called the leukodystrophies.
Cystic fibrosis is a genetic disease that causes a thick, sticky mucus to build up in the lungs, digestive tract, and other areas of the body. It is one of the most common chronic lung diseases in children and young adults.
Newborn Screening is a simple test to identify babies who may have serious medical conditions. Most babies should get their first newborn screen done before going home from the hospital or birth center, ideally between 24 and 48 hours of age.