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 Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
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information, we encourage you to contact your personal physician or the agencies listed as
"Resources" on this report.
Copyright 1985, 1986, 1990, 1991, 1992, 1994, 1995, 1996, 1997, 1999, 2000, 2003, 2007, 2008, 2009
NORD is very grateful to George J. Brewer, MD, Morton S. and Henrietta K. Sellner Emeritus Professor of Human Genetics, Emeritus Professor of Internal Medicine, Departments of Human Genetics and Internal Medicine, University of Michigan Medical School, for assistance in the preparation of this report.
Synonyms of Wilson's Disease
- Hepatolenticular Degeneration
- Lenticular Degeneration, Progressive
Disorder Subdivisions
General Discussion
Wilson’s disease is a rare genetic disorder characterized by excess copper stored in various body tissues, particularly the liver, brain, and corneas of the eyes. The disease is progressive and, if left untreated, it may cause liver (hepatic) disease, central nervous system dysfunction, and death. Early diagnosis and treatment may prevent serious long-term disability and life threatening complications. Treatment is aimed at reducing the amount of copper that has accumulated in the body and maintaining normal copper levels thereafter.
Organizations related to Wilson's Disease
- American Liver Foundation
75 Maiden Lane
Suite 603
New York NY 10038
Phone #: 212-668-1000
800 #: 800-465-4837
e-mail: info@liverfoundation.org
Home page: http://www.liverfoundation.org
- Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg MD 20898-8126
Phone #: 301-251-4925
800 #: 888-205-2311
e-mail: ordr@od.nih.gov
Home page: http://rarediseases.info.nih.gov/Default.aspx
- MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay WI 54301-1243
Phone #: 920-336-5333
800 #: 877-336-5333
e-mail: mums@netnet.net
Home page: http://www.netnet.net/mums/
- Madisons Foundation
PO Box 241956
Los Angeles CA 90024
Phone #: 310-264-0826
800 #: N/A
e-mail: getinfo@madisonsfoundation.org
Home page: http://www.madisonsfoundation.org
- March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains NY 10605
Phone #: 914-997-4488
800 #: 888-663-4637
e-mail: Askus@marchofdimes.com
Home page: http://www.marchofdimes.com
- National Institute of Neurological Disorders and Stroke (NINDS)
P.O. Box 5801
Bethesda MD 20824
Phone #: 301-496-5751
800 #: 800-352-9424
e-mail: me20t@nih.gov
Home page: http://www.ninds.nih.gov/
- Sjældne Diagnoser / Rare Disorders Denmark
Frederiksholms Kanal 2, 3rd Floor
Copenhagen K None 1220
Phone #: 45 -33 -14 00 10
800 #: N/A
e-mail: mail@sjaeldnediagnoser
Home page: http://www.raredisorders.dk
- WE MOVE (Worldwide Education and Awareness for Movement Disorders)
204 West 84th Street
New York NY 10024
Phone #: 212-875-8312
800 #: N/A
e-mail: wemove@wemove.org
Home page: http://www.wemove.org
- Wilson's Disease Association International
1802 Brookside Drive
Wooster OH 44691
Phone #: 330-264-1450
800 #: 800-264-1450
e-mail: info@wilsondisease.org
Home page: http://www.wilsonsdisease.org
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