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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.


Myotubular Myopathy Resource Group


Address

2602 Quaker Drive
Texas City, TX 77590

Phone

4099458569

Email Address

info@mtmrg.org

Description

The Myotubular Myopathy Resource Group is a non-profit, voluntary organization dedicated to enabling affected families to exchange support, resources, and information about this rare disorder. X-linked myotubular myopathy is a rare disorder characterized by weakness of the respiratory muscles causing respiratory distress. In addition, infants with this form of myotubular myopathy are generally weak and have a loss of muscle tone causing poor sucking and an inability to swallow. Weakness of the jaw, tongue, lips, cheeks, mouth, throat, and neck muscles may also be present. The resource group is also committed to identifying affected families, educating the medical community about the disorder, working with several researchers who are attempting to locate the responsible gene, and offering educational materials including fact sheets, reports, and a regular newsletter.

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