Autosomal Recessive Polycystic Kidney Disease
National Organization for Rare Disorders, Inc.
It is possible that the main title of the report Autosomal Recessive Polycystic Kidney Disease is not the name you expected.
Autosomal recessive polycystic kidney disease (ARPKD) is a rare genetic disorder characterized by the formation of fluid-filled sacs (cysts) in the kidneys. Most affected infants have enlarged kidneys during the newborn (neonatal) period and some cases may be fatal at this time. ARPKD is not simply a kidney disease and additional organ systems of the body may also be affected, especially the liver. High blood pressure (hypertension), excessive thirst, frequent urination and feeding difficulties may also occur. Some affected children may also have distinctive facial features and incomplete development of the lungs (pulmonary hypoplasia) causing breathing (respiratory) difficulties. The severity of the disorder and the specific symptoms that occur can vary greatly from one person to another. Some affected children eventually develop end-stage renal disease sometime during the first decade of life. In some patients, symptoms do not develop until adolescence or even adulthood. ARPKD is caused by mutations of the PKHD1 gene.
- PO Box 70
- Kirkwood, PA 17536
- Tel: (717)529-5555
- Fax: (800)807-9110
- Tel: (800)708-8892
- Email: firstname.lastname@example.org
- Website: http://www.arpkdchf.org
American Kidney Fund, Inc.
- 11921 Rockville Pike
- Suite 300
- Rockville, MD 20852
- Tel: (800)638-8299
- Email: email@example.com
- Website: http://www.kidneyfund.org
Birth Defect Research for Children, Inc.
- 976 Lake Baldwin Lane
- Orlando, FL 32814
- Tel: (407)895-0802
- Email: firstname.lastname@example.org
- Website: http://www.birthdefects.org
Children's Liver Disease Foundation
- 36 Great Charles Street
- Birmingham, B3 3JY
- United Kingdom
- Tel: 1212123839
- Fax: 1212124300
- Email: email@example.com
- Website: http://www.childliverdisease.org
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
- Website: http://rarediseases.info.nih.gov/GARD/
Kidney & Urology Foundation of America, Inc.
- 104 West 40th Street
- Suite 500
- New York, NY 10018
- Tel: (212)629-9770
- Fax: (212)629-5652
- Tel: (800)633-6628
- Email: firstname.lastname@example.org
- Website: http://www.kidneyurology.org
March of Dimes
- 1275 Mamaroneck Avenue
- White Plains, NY 10605
- Tel: (914)997-4488
- Fax: (914)997-4763
- Email: AskUs@marchofdimes.org or email@example.com
- Website: http://www.marchofdimes.org and nacersano.org
Medical Home Portal
- Dept. of Pediatrics
- University of Utah
- Salt Lake City, UT 84158
- Tel: (801)587-9978
- Fax: (801)581-3899
- Email: firstname.lastname@example.org
- Website: http://www.medicalhomeportal.org
NIH/National Kidney and Urologic Diseases Information Clearinghouse
- 3 Information Way
- Bethesda, MD 20892-3580
- Fax: (703)738-4929
- Tel: (800)891-5390
- Email: email@example.com
- Website: http://www.kidney.niddk.nih.gov/
National Kidney Foundation
- 30 East 33rd Street
- New York, NY 10016
- Tel: (212)889-2210
- Fax: (212)689-9261
- Tel: (800)622-9010
- Email: firstname.lastname@example.org
- Website: http://www.kidney.org
- 8330 Ward Parkway
- Suite 510
- Kansas City, MO 64114-2000
- Tel: (816)931-2600
- Fax: (816)931-8655
- Tel: (800)753-2873
- Email: email@example.com
- Website: http://www.pkdcure.org
For a Complete Report
This is an abstract of a report from the National Organization for Rare Disorders (NORD). For a full-text version of this report, 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.
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.
Last Updated: 6/27/2016
Copyright 2016 National Organization for Rare Disorders, Inc.
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