U.S. Department of Health and Human Services


Kidney Diseases

National Kidney and Urologic Diseases Information Clearinghouse, National Institute of Diabetes and Digestive and Kidney Diseases

The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) is a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health of the U.S. Department of Health and Human Services. Established in 1987, the Clearinghouse provides information about diseases of the kidneys and urologic system to people with kidney and urologic disorders and to their families, health care profressionals, and the public. The NKUDIC answers inquiries, develops and distributes publications, and works closely with professional and patient organizations and Government agencies to coordinate resources about kidney and urologic diseases.

Review Date: August 17, 2011

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NIH National Institute of Diabetes and Digestive and Kidney Diseases - NIDDK

The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) conducts and supports research on many of the most serious diseases affecting public health. The Institute supports much of the clinical research on the diseases of internal medicine and related subspecialty fields, as well as many basic science disciplines. The Institute's Division of Intramural Research encompasses the broad spectrum of metabolic diseases such as diabetes, obesity, inborn errors of metabolism, endocrine disorders, mineral metabolism, digestive and liver diseases, nutrition, urology and renal disease, and hematology. Basic research studies include biochemistry, biophysics, nutrition, pathology, histochemistry, bioorganic chemistry, physical chemistry, chemical and molecular biology, and pharmacology. NIDDK extramural research is organized into 4 divisions: Diabetes, Endocrinology, and Metabolic Diseases; Digestive Diseases and Nutrition; Kidney, Urologic, and Hematologic Diseases; and Extramural Activities.

Review Date: July 01, 2015

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American Association of Kidney Patients

The American Association of Kidney Patients is a voluntary patient organization, which has been dedicated to improving the lives of fellow kidney patients and their families by helping them deal with the physical, emotional and social impact of kidney disease for more than 40 years. The programs offered by AAKP inform and inspire patients and their families to better understand their condition, adjust more readily to their circumstances and assume more normal, productive lives. To accomplish these goals, AAKP engages in a variety of educational and supportive programs designed: 1) to assist patients both to learn more about their disease and to become active participants in planning and managing their treatment; 2) to improve patient understanding of and access to rehabilitation; 3) to work together for the improvement of public programs that help kidney patients meet their financial and personal needs; 4) to reflect the views and concerns of patients to public policy makers and others in the renal community; 5) and to provide a lifeline for patients in need of emotional support and reassurance that only other patients can provide. AAKP is a national organization that reaches one million people yearly affected by kidney disease, including patients, family members, renal professionals and friends. It is the only national kidney patient organization directed by kidney patients for kidney patients.

Review Date: November 15, 2011

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American Kidney Fund

The American Kidney Fund was founded in 1971 to save the life of one person who needed help paying for dialysis. Forty years later, AKF has become the leading source of direct, treatment-related financial assistance to people in the United States who are living with chronic kidney disease. In 2010, AKF provided treatment-related financial assistance to more than 101,000 dialysis patients nationwide. The work of the American Kidney Fund goes beyond financial assistance. It is also AFK’s mission to provide health education to people with, and at risk for, kidney disease.

Review Date: May 03, 2011

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Kidney and Urology Foundation of America

Kidney & Urology Foundation of America (KUFA) is a national, not-for-profit organization dedicated to helping people with kidney and urologic diseases and individuals waiting for organ and tissue transplants.

Review Date: March 17, 2011

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Kidney Cancer Association

The Kidney Cancer Association works to improve care and increase survival of kidney cancer patients through information, research and patient advocacy with employers, government and insurance companies. Local meetings are held for patients, but there are no organized local chapters.

Review Date: October 05, 2015

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Life Options Rehabilitation Program

Life Options is a program of research, research-based education, and outreach founded in 1993 to help people live long and live well with kidney disease. A national panel of doctors, researchers, patients, nurses, social workers, dietitians, and ESRD Network directors reviews all Life Options materials and helps guide research.

Review Date: October 18, 2011

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Medical Education Institute, Inc.

The Medical Education Institute (MEI) is a mission-driven, non-profit (501c3), private operating foundation dedicated to helping people with chronic diseases learn to manage and improve their health.They fulfill our mission in several ways: •By conducting health behavior research to better understand the patient experience and the interactions between patients and their healthcare teams •By creating educational materials—based on research and adult education principles—to empower patients to manage their health •By distributing these educational resources at little or no cost to maximize their availability •By working with policy-makers and providers to create patient-friendly, rehab-friendly policy.

Review Date: October 18, 2011

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NIH National Kidney Disease Education Program

National Kidney Disease Education Program (NKDEP) is an initiative of the National Institutes of Health, designed to reduce the morbidity and mortality caused by kidney disease and its complications. NKDEP aims to raise awareness of the seriousness of kidney disease, the importance of testing those at high risk (those with diabetes, high blood pressure, or a family history of kidney failure), and the availability of treatment to prevent or slow kidney failure.

Review Date: June 24, 2010

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Polycystic Kidney Disease (PKD) Foundation

The PKD Foundation is a non-for-profit organization dedicated to promoting research to find a treatment and a cure for polycystic kidney disease (PKD). Established in 1982, the PKD Foundation is headquartered in Kansas City, Missouri. PKD affects 600,000 people in the United States and 12.5 million people worldwide. The PKD Foundation's vision is that "no one suffers the full effects of PKD," and the organization hopes to reach this goal by funding vital PKD research and raising awareness of this highly prevalent disease. To fulfill its mission and discover treatments for PKD, the PKD Foundation has launched an integrated research initiative focused on "Accelerating Treatments to Patients," which is designed to speed up the development of treatments for PKD. Key components of this initiative include drug repurposing, targeted research grants, tissue donation, clinical trials and much more. In addition to funding research and educational programs, the PKD Foundation provides a forum for patients, family and friends through more than 60 volunteer-led chapters across the U.S.

Review Date: July 26, 2012

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VHL (Von Hippel-Lindau) Family Alliance

The VHL Family Alliance provides information for families and physicians about this disorder, and local self-help support groups for families affected with VHL. Local family support chapters exist in regions of the U.S. Local chapter meetings are scheduled periodically. International VHL Support Organizations are established on six continents.

Review Date: April 12, 2011

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