Who to Contact
Myotubular Myopathy Resource Group
2413 Quaker Drive
Texas City, Texas, USA 77590
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.
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