Goals

-Provide second opinions for patients with unsolved white matter disease (Virtual Second Opinion Program) and rapid access to clinical experts and researchers in leukodystrophies (Centers of Excellence in Leukodystrophy and Leukoencephalopathy (CELLs) ).

-Provide Connections to Education and Resources with answers to common questions about leukodystrophies and leukoencephalopathies, with information on specific disorders and testing.

-Provide banking of clinical information and tissue specimens in unsolved leukodystrophies and leukoencephalopathies to advance research in the field (Create your Leukodystrophy Profile).

-Provide a forum to investigators for the sharing of information on clinical research (Investigator Forum).

Connect to Education and Resources and get answers to common questions about leukodystrophies and leukoencephalopathies, with information on specific disorders and testing.

The Leukodystrophy Profile allows all persons living with leukodystrophy to join the Myelin Disorders Bioregistry Project. When you join the registry, you give your permission for your information to be reviewed by experts.