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Wegener's Granulomatosis

It is possible that the main title of the report Wegener's Granulomatosis 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.


  • Necrotizing Respiratory Granulomatosis
  • Pathergic Granulomatosis
  • Midline granulomatosis

Disorder Subdivisions

  • None

General Discussion

Wegener's granulomatosis is an uncommon disorder characterized by inflammation of blood vessels (vasculitis) that results in damage to various organ systems of the body, most often the respiratory tract and kidneys. Symptoms may include ulcerations of the mucous membranes in the nose with secondary bacterial infection, a persistent runny nose, sinus pain, and chronic middle ear infection (otitis media) potentially resulting in hearing loss. In some cases, kidney abnormalities may progress to kidney failure, a serious complication. If the lungs are affected, a cough, expectoration of blood (hemoptysis), and inflammation of the thin membrane lining the outside of the lungs and the inside of the lung may be present. The exact cause of Wegener's granulomatosis is not known.


Vasculitis Foundation
PO Box 28660
Kansas City, MO 64188
Tel: (816)436-8211
Fax: (816)436-8211
Tel: (800)277-9474

American Kidney Fund, Inc.
11921 Rockville Pike
Suite 300
Rockville, MD 20852
Tel: (800)638-8299

National Kidney Foundation
30 East 33rd Street
New York, NY 10016
Tel: (212)889-2210
Fax: (212)689-9261
Tel: (800)622-9010

American Lung Association
1301 Pennsylvania Ave NW
Suite 800
Washington, DC 20004
Tel: (202)785-3355
Fax: (202)452-1805
Tel: (800)586-4872

NIH/National Heart, Lung and Blood Institute
P.O. Box 30105
Bethesda, MD 20892-0105
Tel: (301)592-8573
Fax: (301)251-1223

MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243

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
TDD: (888)205-3223

Madisons Foundation
PO Box 241956
Los Angeles, CA 90024
Tel: (310)264-0826
Fax: (310)264-4766

Autoimmune Information Network, Inc.
PO Box 4121
Brick, NJ 08723
Fax: (732)543-7285

European Society for Immunodeficiencies
1-3 rue de Chantepoulet
Geneva, CH 1211
Tel: 410229080484
Fax: 41229069140

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 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 or email

Last Updated: 7/23/2007
Copyright 1986, 1988, 1989, 1996, 1997, 1998, 1999, 2001, 2004, 2005, 2007 National Organization for Rare Disorders, Inc.


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