The National Organization for Rare Disorders (NORD)

Database Subscriptions

Many libraries, schools, universities, and hospitals subscribe to NORD’s Rare Disease Database for unlimited access to reports on more than 1,200 diseases.

Index of Rare Diseases

This is the list of diseases currently covered in the Rare Disease Database.

Rare Disease Database

Search this database for reports on more than 1,200 diseases.

View sample report

Index of Organizations

This is the list of organizations in NORD’s Organizational Database.

Organizational Database

Read about more than 2,000 patient organizations and other sources of help.

NORD's
Washington Office

NORD's Washington OfficeRead about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.

 



Polycystic Kidney Diseases

To purchase full-text report ($7.50):
View Cart/Checkout

The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. No part of the NORD web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial purposes without the express written permission of NORD. Permission is hereby granted to print one hard copy of the information on an individual disease for your personal use, provided that such content is in no way modified, and the credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions is strictly prohibited.

The information in NORD's Rare Disease Database is for educational purposes only. It should never be used for diagnostic or treatment purposes. If you have questions regarding a medical condition, always seek the advice of your physician or other qualified health professional. NORD's reports provide a brief overview of rare diseases. For more specific information, we encourage you to contact your personal physician or the agencies listed as "Resources" on this report.

Copyright 1986, 1987, 1990, 1991, 1992, 1994, 1995, 1996, 1999, 2002, 2003



Synonyms of Polycystic Kidney Diseases
  • PKD
  • Polycystic Renal Diseases

Disorder Subdivisions

  • ADPKD
  • Adult Polycystic Kidney Disease
  • ARPKD
  • Autosomal Dominant Polycystic Kidney Disease
  • Autosomal Recessive Polycystic Kidney Disease
  • Infantile Autosomal Recessive Polycystic Kidney Disease
  • Juvenile Autosomal Recessive Polycystic Kidney Disease
  • Neonatal Autosomal Recessive Polycystic Kidney Disease
  • Perinatal Polycystic Kidney Diseases
  • PKD1
  • PKD2
  • PKD3
  • Potter Type III Polycystic Kidney Disease
  • Potter Type I Infantile Polycystic Kidney Diseases


General Discussion
Polycystic Kidney Diseases are inherited renal disorders characterized by the presence of multiple cysts in both kidneys (bilateral renal cysts). Normal kidney tissue is replaced by fluid-filled sacs or cysts of varying sizes that become larger as the disease progresses. Findings associated with Polycystic Kidney Diseases include abnormally high blood pressure (hypertension) and the progressive loss of kidney function, leading to end-stage renal failure. Symptoms may include abdominal distention, vomiting, and/or failure to thrive. Some infants with Autosomal Recessive Polycystic Kidney Disease (ARPKD) have unusual facial features. This occurs when there is a severe reduction in the amount of amniotic fluid surrounding the developing fetus (oligohydramnios), resulting in what is known as the Potter deformation sequence.

There are two major subdivisions of Polycystic Kidney Disease (PKD): Autosomal Recessive Polycystic Kidney Disease (ARPKD) and Autosomal Dominant Polycystic Kidney Disease (ADPKD).

ARPKD was previously subdivided into perinatal, neonatal, infantile, and juvenile forms. The different forms of the disease were based on the age at onset, which frequently correlates with the rate of progression and severity of the symptoms. This classification is archaic and is no longer valid nor should it be used.

ADPKD typically affects adults although increasing numbers of children are identified because of the increased use of ultrasound. ADPKD typically progresses more slowly than ARPKD.
.

Organizations related to Polycystic Kidney Diseases
  • ARPKD/CHF Alliance
    PO Box 70
    Kirkwood PA 17536
    Phone #: 717-529-5555
    800 #: 800-708-8892
    e-mail: info@arpkdchf.org
    Home page: http://www.arpkdchf.org
  • American Kidney Fund, Inc.
    6110 Executive Boulevard
    Suite 1010
    Rockville MD 20852
    Phone #: 301-881-3052
    800 #: 800-638-8299
    e-mail: mdemelo@kidneyfund.org
    Home page: http://www.kidneyfund.org
  • American Urological Association Foundation
    1000 Corporate Blvd.
    Linthicum MD 21090
    Phone #: 410-689-3700
    800 #: 866-746-4282
    e-mail: auafoundation@auafoundation.org
    Home page: http://www.auafoundation.org
  • Birth Defect Research for Children, Inc.
    800 Celebration Ave, Suite 225
    Orlando FL 34747
    Phone #: 407-566-8304
    800 #: --
    e-mail: staff@birthdefects.org
    Home page: http://www.birthdefects.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: http://rarediseases.info.nih.gov/GARD/EmailForm.aspx
    Home page: http://rarediseases.info.nih.gov/GARD
  • Guay-Woodford, Lisa M., M.D.
    Division of Nephrology
    University of Alabama Medical Center
    ZRB 624, 1530 Third Ave S.
    Birmingham AL 35294-0007
    Phone #: 205-934-7308
    800 #: --
    e-mail: N/A
    Home page: N/A
  • International Patient Advocacy Association
    800 Bellevue Way
    MGM Building, Suite 400
    Bellevue WA 98004
    Phone #: 426-646-3768
    800 #: --
    e-mail: N/A
    Home page: N/A
  • Kidney & Urology Foundation of America, Inc.
    152 Madison Ave.
    Suite 201
    New York NY 10016
    Phone #: 212-629-9770
    800 #: 800-633-6628
    e-mail: info@kidneyurology.org
    Home page: http://www.kidneyurology.org
  • MUMS 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
  • NIH/National Kidney and Urologic Diseases Information Clearinghouse
    3 Information Way
    Bethesda MD 20892-3580
    Phone #: N/A
    800 #: 800-891-5390
    e-mail: nkudic@info.niddk.nih.gov
    Home page: http://www.kidney.niddk.nih.gov/
  • National Hypertension Association, Inc.
    324 East 30th Street
    New York NY 10016
    Phone #: 212-889-3557
    800 #: 800-575-9355
    e-mail: nathypertension@aol.com
    Home page: http://www.nathypertension.org
  • National Kidney Foundation
    30 East 33rd Street
    New York NY 10016
    Phone #: 212-889-2210
    800 #: 800-622-9010
    e-mail: info@kidney.org
    Home page: http://www.kidney.org
  • PKD Foundation
    9221 Ward Parkway
    Suite 400
    Kansas City MO 64114-3367
    Phone #: 816-931-2600
    800 #: 800-753-2873
    e-mail: pkdcure@pkdcure.org
    Home page: http://www.pkdcure.org

ABOUT NORD .|. CONTACT NORD .|. MEMBERSHIP .|. PRIVACY POLICY .|. DISCLAIMER .|. HOME
©2009 NORD - National Organization for Rare Disorders, Inc. All rights reserved.

Last modified Wednesday, November 26, 2008