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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 This classification is archaic and is no longer valid nor should it be used.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
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