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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.

Myelin Disorders Bioregistry Project (MDBP)

a/k/a: MDBP

Address

Childrens National Medical Center, c/o Dr. Adeline Vanderver
111 Michigan Ave., NW
Washington, DC 20010

Phone

202-476-6230

Fax

202-476-5226

Email Address

myelin@cnmc.org

Website

http://www.myelindisorders.org/profile.aspx

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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