Vanderbilt established the Leukodystrophy Care Network (VLCN) in 2017 to bring the expertise of specialists in many disciplines to the care of children with leukodystrophies that including Krabbe and similar severe diseases.
Kevin C. Ess, M.D., Ph.D., Chief of the Division of Pediatric Neurology, leads the VLCN. Our many medical disciplines working together is an essential part of VLCN. Experts involved in the care your child with leukodystrophies include those from neurology, genetics, hematology, complex care, pulmonary care and social work.
The VLCN is a nationwide network with many centers throughout the nation. The parent organization Hunter’s Hope was originally founded to provide support for patients with Krabbe Disease. It has since expanded to include many other leukodystrophies, which led to the concept of a Leukodystrophy Care Network.
The VLCN is helpful because of the way the state of Tennessee screens newborns for genetic diseases. The state now screens for Krabbe, Hurler, Gaucher, Pompe, and Fabry Diseases, and added X-linked adrenoleukodystrophy (ALD) in 2018.