Myotubular Myopathy Resource Group
Information About Myotubular Myopathy Resource Group
About Myotubular Myopathy Resource Group :
Myotubular Myopathy Resource Group is a health related organization- Information Center Non-profit. It is also known as  Myotubular Myopathy Resource Group
Address Of Myotubular Myopathy Resource Group :
Myotubular Myopathy Resource Group, 2602 Quaker Drive, Texas City, Tx 77590-3782.
Contact Information Of Myotubular Myopathy Resource Group Is :
Phone Number :
(409) 945-8569 (409) 945-2162 (Fax)
Email Address :
Web Address :
Main Activity Of Myotubular Myopathy Resource Group
-: is a non-profit organization formed: to establish parent to parent connections for advice, support and advocacy; to establish physician to physician connections to create shared research about successful and unsuccessful medical interventions and treatment plans; and to link families and physicians with researchers interested in this disease.
-: Myotubular Myopathy, also called Centronuclear Myopathy, is a family of rare, inherited diseases that manifests itself as a defect in the cell structure of voluntary muscles; causes low muscle tone; and, in most forms, is usually apparent at birth.
-: Affected children have diminished respiratory capacity and are often partially or totally ventilator dependent.
-: The key to diagnosis, carrier identification, and treatment lies in getting DNA samples from affected families to researchers.
Other Activities Of Myotubular Myopathy Resource Group
Affected children have diminished respiratory capacity and are often partially or totally ventilator dependent.
The Network Of Myotubular Myopathy Resource Group In Nation And Number Of Libraries
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