Important It is possible that the main title of the report Myopathy, Myofibrillar is not the name you expected.
BAG3-related myofibrillar myopathy
Myofibrillar myopathies are a group of rare genetic neuromuscular disorders that may be diagnosed in childhood but most often appear after 40 years of age. These conditions are highly variable but are characterized by a slowly progressive muscle weakness that can involve skeletal and smooth muscle. Skeletal muscle weakness can be present in the muscles close to the center of the body (proximal) as well as the distal muscles. A weakening of the heart muscle (cardiomyopathy) is common and may manifest as arrhythmia, conduction defects or congestive heart failure.
Sudden Arrhythmia Death Syndromes Foundation 508 E. South Temple Suite 202 Salt Lake City, UT 84102 USA Tel: (801)531-0937 Fax: (801)531-0945 Tel: (800)786-7723 Email: firstname.lastname@example.org Internet: http://www.sads.org
Muscular Dystrophy Association 3300 East Sunrise Drive Tucson, AZ 85718-3208 USA Tel: (520)529-2000 Fax: (520)529-5300 Tel: (800)572-1717 Email: email@example.com Internet: http://www.mda.org/
Muscular Dystrophy Campaign 61 Southwark Street London, SE1 0HL United Kingdom Tel: 02078034800 Email: firstname.lastname@example.org Internet: http://www.muscular-dystrophy.org
Cardiac Arrhythmias Research and Education Foundation, Inc. (C.A.R.E) 427 Fulton Street P.O. Box 69 Seymour, WI 54165 USA Fax: (920)833-7005 Tel: (800)404-9500 Email: email@example.com Internet: http://www.longqt.org or http://www.careforhearts.org
For a Complete Report
This is an abstract of a report from the National Organization for Rare Disorders (NORD). A copy of the complete report can be downloaded free from the NORD website for registered users. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational therapies (if available), and references from medical literature. For a full-text version of this topic, go to www.rarediseases.org and click on Rare Disease Database under "Rare Disease Information".
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It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report
This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.
For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email firstname.lastname@example.org
Last Updated: 4/26/2010 Copyright 1994, 1995, 2000, 2010 National Organization for Rare Disorders, Inc.
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