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Childrens National Medical Center, c/o Dr. Adeline Vanderver
111 Michigan Ave., NW
Washington, DC 20010
The Myelin Disorders Bioregistry Project provides second opinions (Virtual Second Opinion Program) for unsolved leukodystrophies, as well as creating a biobank of serum, plasma, DNA, and cerebrospinal fluid (CSF) from subjects with various leukodystrophies. The mission of this project is to decrease the number of patients without a formal diagnosis, advocate for this group of disorders as a whole and provide tissue and sample resources to advance the understanding of individual genetic disorders affecting the white matter of the brain. Leukodystrophies are a group of very rare, progressive, metabolic, genetic diseases that affect the brain, spinal cord and often the peripheral nerves. Each type of leukodystrophy is caused by a specific gene abnormality that leads to abnormal development of one of at least 10 different chemicals that make up the white matter (myelin sheath) of the brain. The myelin sheath is the protective covering of the nerve and nerves can't function normally without it. Each type of leukodystrophy affects a different part of the myelin sheath, leading to a range of neurological problems.
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