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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

United Leukodystrophy Foundation


224 N. 2nd St.
Suite 2
DeKalb, IL 60115


(815) 748-3211


(815) 748-0844

800 Number

(800) 728-5483

Email Address

[email protected]


The United Leukodystrophy Foundation (ULF) is a voluntary, non-profit organization dedicated to helping children and adults with leukodystrophy and assisting the family members, caregivers, and professionals who serve them. Leukodystrophy is a group of rare, progressive diseases that affect the white matter of the brain. Established in 1982, the United Leukodystrophy Foundation is committed to the identification, treatment, and cure of all leukodystrophies through programs of education, advocacy, research, and service. The foundation also provides appropriate referrals, including support groups; promotes professional and patient education; and offers a variety of educational and support materials. These include a regular newsletter, brochures, and audiovisual aids.

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