Treating Inherited Leukodystrophies

Inherited leukodystrophies affect the myelin (white matter) of the brain and can affect:

  • newborns,
  • children,
  • adolescents, as well as
  • adults. 

University of Utah Health's Leukodystrophy Clinic/Western Leukodystrophy Project, accepts referrals for evaluation, diagnosis, and treatment of inherited leukodystrophies.

If families are interested, they can enroll in the Western Leukodystrophy Project, one of the largest longitudinal studies of children with leukodystrophies. Requests for referrals should be initiated through our refer-a-patient page or by contacting Dr. Bonkowsky directly by email.

The program works nationally and internationally on clinical and drug trials with foundations and support groups including ALD Connect, GLIA (The Global Leukodystrophy Initiative). and the ULF (United Leukodystrophy Foundation).

Leukodystrophy Care Network/LCN Certified

The University of Utah Department of Pediatrics and Primary Children's Hospital, Western Leukodystrophy Project, operate a center for leukodystrophy care (Leukodystrophy Care Center).

Contact information:

Center Director: Josh Bonkowsky, joshua.bonkowsky@hsc.utah.edu, 801-213-3599

Care Coordinator: Emily Hardy

The University of Utah Leukodystrophy Clinic, working with Primary Children's Hospital, accepts referrals for evaluation, diagnosis, and treatment of inherited leukodystrophies. 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).

The University of Utah Leukodystrophy Clinic was established in 2004, and has cared and treated hundreds of children and adults with leukodystrophies.  We accept referrals and consults from around the country and internationally.

The University of Utah and Primary Children's has a complete range of clinical services, ranging from specialized clinical and research genetic testing; bone marrow and stem cell transplants; physical and speech therapy; and specialists in every pediatric sub-specialty.

 The University of Utah is a LCN Certified Center, meeting or exceeding the Criteria for LCN Center Certification, link - https://huntershope.org/family-care/leukodystrophy-care-network/lcn-care-centers/

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 - leukodystrophycarenetwork.org

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