Myotubular Myopathy

• Who to Contact
• Where to Go to Chat with Others
• Learn More About It
• Web Sites
• Search Google for "Myotubular Myopathy"

Who to Contact

Myotubular Myopathy Resource Group
2413 Quaker Drive
Texas City, Texas, USA 77590
(409) 945-8569
Web: http://www.mtmrg.org/

Myotubular Myopathy Resource Group facilitates family-to-family; family-to-researcher; physician-to-physician contact for persons with an interest in Myotubular Myopathy. They match affected families with others in their geographical area. The Group occasionally publish a newsletter for affected families. They also host a conference: Myotubular Myopathy and Centronuclear Myopathy Conference

 

Where to Go to Chat with Others

• Myotubular Myopathy
  A Rare Disease Support eGroup for People affected by 'Myotubular Myopathy'
• The Myopathy Mailing List
  For anyone who has an interest in, has, or is living with someone who has, a myopathy. Myopathy@yahoogroups.com is our forum for support, exchanging ideas, sharing experiences, offering encouragement and information on many topics. These topics will include, but are not limited to; diagnosis, conventional and alternative therapies, personal health care, news, diet, support groups, doctors, website resources, nutrition and so much more! We also welcome medical professionals who have a special interest in Neuromuscular Diseases.

Learn More About It

• Myotubular (Centronuclear) Myopathy information from OMIM
• Frequently Asked Questions (FAQs) about Myotubular Myopathy
• Myotubular Myopathy (MTM or MM)
  Information from MDA.
• Myotubular Myopathy: Centronuclear Myopathy
  Information from Contact a Family - UK
  
• NINDS Congenital Myopathy Information Page
  
• Congenital Myopathies from eMedicine
• X-linked myotubular myopathy
  From Genetics Home Reference
   

Web Sites

• Myotubular Myopathy Resource Group
• Centronuclear & Myotubular Myopathy Information Point
• The Joshua Frase Foundation

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Last Updated July 13, 2009 by familyvillage@waisman.wisc.edu
Document Source: http://www.familyvillage.wisc.edu/lib_myot.htm