Brain & Spine CEnter

Leukodystrophy Program

The Leukodystrophy Program at Primary Children's Hospital is provided through a coordinated team from Primary Children's and the University of Utah School of Medicine, Department of Pediatrics. The clinic is part of the Western Leukodystrophy Project, is the center for leukodstrophy care in the Intermountain West. The Leukodystrophy Clinic is also a Leukodystrophy Care Network Certified Center.

The Leukodystrophy Clinic was established in 2004, and has cared for and treated hundreds of children and adults with leukodystrophies from all over the country, and internationally. We accept referrals for evaluation, diagnosis, and treatment of the inherited leukodystrophies, including prenatal and pregnancy counseling. 

Leukodystrophy Care Network Certified Center

Primary Children's Hospital is a LCN Certified Center, meeting or exceeding the Criteria for LCN Center Certification.

The Leukodystrophy Care Network (LCN) is a community of affected families, organizations and medical providers committed to revolutionizing the health and quality of life of individuals affected by leukodystrophies with proactive, innovative, and comprehensive medical care standards and specialized centers. To learn more, please visit the LCN website.

Western Leukodystrophy Project

If families are interested, they can enroll in the Western Leukodystrophy Project, one of the largest longitudinal studies of children with leukodystrophies. The program works nationally and internationally on clinical and drug trials with foundations and support groups, including ALD Connect, GLIA (The Global Leukodystrophy Initiative), Hunter's Hope/Leukodystrophy Care Network, and the ULF (United Leukodystrophy Foundation).