Synonyms

• Hereditary Optic Neuroretinopathy
• Leber's Disease
• Leber's Optic Neuropathy (LHON)
• Leber's Optic Atrophy

Disorder Subdivisions

• None

General Discussion

Leber hereditary optic neuropathy (LHON) is a rare inherited disorder of the eye that is characterized by the relatively slow, painless, progressive loss of vision. This disorder can initially affect one eye or both, but both eyes are usually affected within six months. In most cases, visual loss is permanent. LHON is a genetic disorder that occurs as the result of a mutation in the mitochondrial DNA that is inherited from the mother or arises as a new sporadic mitochondrial DNA mutation.

Resources

National Association for Visually Handicapped
22 West 21st Street
New York, NY 10010
USA
Tel: 2128893141
Fax: 2127272931
Email: staff@navh.org
Internet: http://www.navh.org

United Mitochondrial Disease Foundation
8085 Saltsburg Road
Suite 201
Pittsburgh, PA 15239
United States
Tel: 4127938077
Fax: 4127936477
Email: info@umdf.org
Internet: http://www.umdf.org

National Association for Parents of Children with Visual Impairments (NAPVI)
P.O. Box 317
Watertown, MA 02472
Tel: (617)972-7441
Fax: (617)972-7444
Tel: (800)562-6265
Email: napvi@perkins.org
Internet: http://www.napvi.org

National Federation of the Blind
1800 Johnson Street
Baltimore, MD 21230
USA
Tel: 4106599314
Fax: 4106855653
Email: nfb@nfb.org
Internet: http://www.nfb.org

American Council of the Blind, Inc.
1155 15th Street
Suite 1004
Washington, DC 20005
Tel: (202)467-5081
Fax: (202)467-5085
Tel: (800)424-8666
Internet: http://www.acb.org

American Foundation for the Blind
11 Penn Plaza
Suite 300
New York, NY 10001
Tel: (212)502-7600
Fax: (212)502-7777
Tel: (800)232-5463
TDD: (212)502-7662
Email: afbinfo@afb.org
Internet: http://www.afb.org

Council of Families with Visual Impairment
1155 15th St. NW
Suite 1004
Washington, DC 20005
Tel: (202)465-5081
Fax: (202)465-5085
Email: info@acb.org
Internet: http://www.acb.org/

Guiding Eyes for the Blind, Inc.
611 Granite Springs Road
Yorktown Heights, NY 10598
Tel: (914)245-4024
Fax: (914)245-1609
Tel: (800)942-0149
Email: info@guidingeyes.org
Internet: http://www.guidingeyes.org

NIH/National Eye Institute
Building 31 Rm 6A32
31 Center Dr MSC 2510
Bethesda, MD 20892-2510
United States
Tel: 3014965248
Fax: 3014021065
Email: 2020@nei.nih.gov
Internet: http://www.nei.nih.gov/

Blind Children's Center
4120 Marathon Street
Los Angeles, CA 90029-3584
USA
Tel: 3236642153
Fax: 3236653828
Tel: 8002223566
Email: info@blindcntr.org
Internet: http://www.blindcntr.org

International Foundation for Optic Nerve Disease (IFOND)
PO Box 777
Cornwall, NY 12518
USA
Tel: 8455347250
Fax: 8455347250
Email: IFOND@AOL.COM
Internet: http://www.IFOND.ORG

MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
Tel: 9203365333
Fax: 9203390995
Tel: 8773365333
Email: mums@netnet.net
Internet: http://www.netnet.net/mums/

Macular Degeneration Support, Inc.
3600 Blue Ridge
Grandview, MO 64030
USA
Tel: 8167617080
Fax: 8167617080
Email: director@mdsupport.org
Internet: http://www.mdsupport.org

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders, Inc. ® (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html

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:  4/18/2008
Copyright  1988, 1989, 1994, 1995, 1997, 2005National Organization for Rare Disorders, Inc.