Alport Syndrome

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Alport Syndrome 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.

Synonyms

  • Hereditary Nephritis
  • Nephritis and Nerve Deafness, Hereditary
  • Nephropathy and Deafness, Hereditary
  • Hematuria-Nephropathy Deafness
  • Hemorrhagic Familial Nephritis
  • Hereditary Deafness and Nephropathy
  • Hereditary Nephritis With Sensory Deafness
  • Congenital hereditary hematuria

Disorder Subdivisions

  • Autosomal Dominant Alport Syndrome (ADAS)
  • Autosomal Recessive Alport Syndrome (ARAS)
  • X-Linked Alport Syndrome (XLAS)

General Discussion

Alport syndrome is a group of hereditary disorders characterized by progressive deterioration of parts of the kidney known as basement membranes. This deterioration may lead to chronic kidney (renal) disease. Eventually, severe renal failure (end-stage renal disease or ESRD) may develop. Some types of Alport syndrome may also affect vision and hearing. Most cases of Alport syndrome have an X-linked pattern of inheritance.

Resources

American Kidney Fund, Inc.
6110 Executive Boulevard
Suite. 1010
Rockville, MD 20852
USA
Tel: (301)881-3052
Fax: (301)881-0898
Tel: (800)638-8299
Email: mdemelo@kidneyfund.org
Internet: http://www.kidneyfund.org

National Kidney Foundation
30 East 33rd Street
New York, NY 10016
Tel: (212)889-2210
Fax: (212)689-9261
Tel: (800)622-9010
Email: info@kidney.org
Internet: http://www.kidney.org

American Urological Association Foundation
1000 Corporate Blvd
Suite 401
Linthicum, MD 21090
USA
Tel: (410)689-3700
Fax: (410)689-3800
Tel: (866)746-4282
Email: auafoundation@auafoundation.org
Internet: http://www.urologyhealth.org/auafhome.asp

NIH/National Kidney and Urologic Diseases Information Clearinghouse
3 Information Way
Bethesda, MD 20892-3580
Fax: (703)738-4929
Tel: (800)891-5390
TDD: (866)569-1162
Email: nkudic@info.niddk.nih.gov
Internet: http://www.kidney.niddk.nih.gov/

MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
Tel: (920)336-5333
Fax: (920)339-0995
Tel: (877)336-5333
Email: mums@netnet.net
Internet: http://www.netnet.net/mums/

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
Internet: http://rarediseases.info.nih.gov/GARD/

Madisons Foundation
PO Box 241956
Los Angeles, CA 90024
Tel: (310)264-0826
Fax: (310)264-4766
Email: getinfo@madisonsfoundation.org
Internet: http://www.madisonsfoundation.org

Let Them Hear Foundation
1900 University Avenue, Suite 101
East Palo Alto, CA 94303
Tel: (650)462-3143
Fax: (650)462-3144
Tel: (877)735-2929
Email: info@letthemhear.org
Internet: http://www.letthemhear.org

Perkins School for the Blind
175 North Beacon Street
Watertown, MA 02472
Tel: (617)924-3434
Fax: (617)926-2027
Email: Info@Perkins.org
Internet: http://www.Perkins.org

National Consortium on Deaf-Blindness
The Teaching Research Institute
345 N. Monmouth Avenue
Monmouth, OR 97361
Tel: (800)438-9376
Fax: (503)838-8150
Tel: (800)438-9376
TDD: (800)854-7013
Email: info@nationaldb.org
Internet: http://www.nationaldb.org

Kidney & Urology Foundation of America, Inc.
2 West 47th Street
Suite 401
New York, NY 10036
Tel: (212)629-9770
Fax: (212)629-5652
Tel: (800)633-6628
Email: info@kidneyurology.org
Internet: http://www.kidneyurology.org

Alport Syndrome Foundation
1608 E. Briarwood Terrace
Phoenix, AZ 85048-9414
Tel: (480)460-0621
Fax: (480)460-0621
Email: info@alportsyndrome.org
Internet: http://www.alportsyndrome.org

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:  8/17/2007
Copyright  1988, 1989, 2004, 2007 National Organization for Rare Disorders, Inc.

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