Kidney / Urologic Conditions

Including Polycystic Kidney Disease, von Hippel Lindau Syndrome, renal cell carcinoma, Diabetes Insipidus, posterior urethral valves (PUV), congenital urologic anomalies / obstructive uropathy, Prune Belly Syndrome, bilateral renal agenesis (Potter Syndrome), VATER / VACTRL association, other

General

National Kidney Foundation

30 East 33rd Street

New York, NY 10016

Phone: 800.622.9010

Web site: www.kidney.org/

Polycystic Kidney Disease

PKD Foundation (Polycystic Kidney Disease Foundation)

Phone: 1.800.PKD.CURE (800.753.2873) or 816.931.2600

Fax: 816.931.8655

E-mail: pkdcure@pkdcure.org

Web site: www.pkdcure.org/

Polycystic Kidney Disease resources

Renal / Kidney Cancer (renal cell carcinoma)

von Hippel-Lindau Syndrome

von Hippel-Lindau Family Alliance

Diabetes Insipidus

• Nephrogenic Diabetes Insipidus [NDI, Vasopressin-Resistant Diabetes Insipidus. Includes: Nephrogenic Diabetes Insipidus, Autosomal; Nephrogenic Diabetes Insipidus, X-Linked], GeneReviews
• Diabetes Insipidus Foundation, Inc.
• Nephrogenic Diabetes Insipidus Foundation
• Diabetes Insipidus and Related Disorders Network (DIARD)
• Diabetes Insipidus, National Institute of Diabetes & Digestive and Kidney Diseases (NIDDK), National Institutes of Health (NIH)
• Diabetes Insipidus, the Pituitary Foundation
• Diabetes Insipidus, American Academy of Family Physicians (Spanish version)
• Diabetes insipidus, Medline Plus
• American Diabetes Association

Posterior Urethral Valves (PUV), congenital urologic anomalies / obstructive uropathy, Prune Belly Syndrome, VATER / VACTRL Association, other

• Posterior Urethral Valves / Congenital Urologic Anomalies, family site, urology links

Potter Syndrome (bilateral renal agenesis)

• Potter's Syndrome Support Group
• Potter's Syndrome Support Group (family forum)

VATER / VACTRL association

Also See:

• National organizations - information on genetic conditions or birth defects
• United Network for Organ Sharing, transplantation information
• Internet Nephrology Resources, accompaniment to "Internet Resources for Nephrologists",   Brady & Wilcox: Therapy in Nephrology and Hypertension: Companion to Brenner and Rector's The Kidney
• RENALNET: Kidney Information Clearinghouse, Maddux and Maddux, nephrologists, Danville, VA, cause, treatment, management of kidney disease, End Stage Renal Disease (ESRD)
• Your Urinary System and How it Works, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institutes of Health (NIH), Bethesda, MD, USA
• National Kidney and Urologic Diseases Information Clearinghouse
• Fetal Diagnoses: Obstructive Uropathy, Children's Hospital, Philadelphia, PA
• Renal Genes, University of Michigan
• Brophy Laboratory, kidney genes research, University of Michigan

To locate a genetic counselor or clinical geneticist in your area:

• Professional Genetics Societies
• Genetic clinics, centers, departments

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Genetics Education Center
University of Kansas Medical Center © 1995-2012
Debra Collins, M.S. CGC, Genetic Counselor, dcollins@kumc.edu

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