Distal Myopathy

National Organization for Rare Disorders, Inc.

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It is possible that the main title of the report Distal Myopathy is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.


  • Distal Muscular Dystrophy

Disorder Subdivisions

  • None

General Discussion

Distal myopathy (or distal muscular dystrophy) is a general term for a group of rare progressive genetic disorders characterized by wasting (atrophy) and weakness of the voluntary distal muscles. The distal muscles are those farther from the center of the body and include the muscles of the lower arms and legs and the hands and feet. Conversely, the proximal muscles are the muscles closest to the center of the body such as the muscles of the shoulder, pelvis, and upper arms and legs. Although age of onset can occur anytime from infancy to adulthood, most forms develop later in life and are slowly progressive. Inheritance is autosomal dominant or recessive.

The distal myopathies belong to a larger group of disorders known as the muscular dystrophies. The muscular dystrophies are characterized by weakness and degeneration of various voluntary muscles of the body. Approximately 30 different disorders make up the muscular dystrophies. The disorders affect different muscles and have different ages of onset, severity and inheritance patterns.

Supporting Organizations

Child Neurology Foundation

201 Chicago Ave, #200
Minneapolis, MN 55415
Tel: (952)641-6100
Fax: (952)881-6276
Tel: (877)263-5430
Email: jstone@childneurologyfoundation.org
Website: http://www.childneurologyfoundation.org

European Alliance of Neuromuscular Disorders Associations

MDG Malta 4
Gzira Road
Gzira, GAR 04
Tel: 35621346688
Fax: 35621318024
Email: eamda@hotmail.com
Website: http://www.eamda.eu/

Genetic and Rare Diseases (GARD) Information Center

PO Box 8126
Gaithersburg, MD 20898-8126
Tel: (301)251-4925
Fax: (301)251-4911
Tel: (888)205-2311
Website: http://rarediseases.info.nih.gov/GARD/

Jain Foundation Inc.

9725 Third Avenue NE
Suite 204
Seattle, WA 98115
Tel: (425)882-1492
Fax: (240)282-0510
Email: patients@jain-foundation.org
Website: http://www.jain-foundation.org

March of Dimes Birth Defects Foundation

1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: (914)997-4488
Fax: (914)997-4763
Website: http://www.marchofdimes.com

Muscular Dystrophy Association

3300 East Sunrise Drive
Tucson, AZ 85718-3208
Tel: (520)529-2000
Fax: (520)529-5300
Tel: (800)572-1717
Email: mda@mdausa.org
Website: http://www.mda.org/

Muscular Dystrophy Association of New Zealand, Inc.

PO Box 16-238
New Zealand
Tel: 98150247
Fax: 92777540
Tel: 800800337
Email: info@mda.org.nz
Website: http://www.mda.org.nz/

Muscular Dystrophy Australia

111 Boundary Road
North Melbourne
VIC 3051
Tel: 61393209555
Fax: 61393209595
Tel: 1800656632
Email: info@mda.org.au
Website: http://www.mda.org.au

Muscular Dystrophy Campaign

61 Southwark Street
London, SE1 0HL
United Kingdom
Tel: 2078034800
Email: info@muscular-dystrophy.org
Website: http://www.muscular-dystrophy.org

Muscular Dystrophy Canada

2345 Yonge Street Suite 900
Ontario, M4P 2E5
Tel: 4164880030
Fax: 4164887523
Tel: 866MUSCLE8
Email: info@muscle.ca
Website: http://www.muscle.ca

Muscular Dystrophy Ireland

75 Lucan Road
Tel: 16236414
Fax: 16208663
Email: info@mdi.ie
Website: http://www.mdi.ie/

NIH/National Institute of Neurological Disorders and Stroke

P.O. Box 5801
Bethesda, MD 20824
Tel: (301)496-5751
Fax: (301)402-2186
Tel: (800)352-9424
Website: http://www.ninds.nih.gov/

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".

The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.

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 orphan@rarediseases.org

Last Updated:  12/13/1969
Copyright  2007 National Organization for Rare Disorders, Inc.