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United Leukodystrophy Foundation


Serves individuals and families affected by leukodystrophy by exchanging information and promoting progress on research, treatment and prevention.

Program Overview

The United Leukodystrophy Foundation (ULF) addresses the unique needs and concerns of patients, families, and professionals whose lives are touched by the devastating diseases of the leukodystrophies and related disorders. Because leukodystrophy is rare and unknown even to most medical practitioners, the ULF provides important educational and support functions to the families, and the medical, educational, and social service professionals who treat them. We are committed to funding research through Initial Project Grants and Sustaining Grants.

As the only voluntary health agency in the U.S. providing support for all the luekodystrophies and related white matter disorders, the United Leukodystrophy Foundation aids caregivers in the better treatment and care of affected patients and helps families better deal with these genetic and fatal disorders. The ULF serves families and professionals through referral services, an annual national conference, a networking program, and education through newsletters and a website. The Foundation awards vital grant funding to research scientists in multiple countries.

The United Leukodystrophy Foundation conducts the only national conference on leukodystrophies at which families and medical professionals from around the world come together to share education, support, and advancement in research.