NORD's
Washington Office
 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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"Resources" on this report.
Copyright 1994, 1999, 2000, 2003
Synonyms of Degos Disease
- Degos-Kohlmeier Disease
- Degos Syndrome
- Kohlmeier-Degos Disease
- Malignant Atrophic Papulosis
Disorder Subdivisions
General Discussion
Degos disease is a rare systemic disorder that affects small and medium sized arteries, causing them to become blocked (occlusive arteriopathy). Degos disease usually progresses through two stages. During the first stage, characteristic skin lesions appear that may last for a period of time ranging from weeks to years. The second stage of Degos disease is most frequently characterized by lesions in the small intestine, but other organs may also be affected. Major symptoms may include abdominal pain, diarrhea, and/or weight loss. Intestinal lesions may break through the wall of the bowel (perforation), a potentially life-threatening complication. The exact cause of Degos disease is unknown.
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Organizations related to Degos Disease
- Degos Patients' Support Network
28 Glenville Road
Rustington, West Sussex None BN16 2EA
Phone #: 44 -190-3 787737
800 #: N/A
e-mail: judith@degosdisease.com
Home page: http://www.degosdisease.com
- Digestive Disease National Coalition
507 Capitol Court, NE
Suite 200
Washington DC 20002
Phone #: 202-544-7497
800 #: --
e-mail: ddnc@hmcw.org
Home page: http://www.ddnc.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
- NIH/National Digestive Diseases Information Clearinghouse
2 Information Way
Bethesda MD 20892-3570
Phone #: 301-654-3810
800 #: 800-891-5389
e-mail: nddic@info.niddk.nih.gov
Home page: http://www.niddk.nih.gov
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