Resources for Patients and Their Loved Ones:
Chronic Kidney Disease
American Association of Kidney Patients (AAKP)
http://www.aakp.org/
AAKP is a national nonprofit organization founded by kidney patients for kidney
patients. It strives to educate and improve the health and well-being of chronic kidney
disease (CKD) patients, individuals on hemodialysis and peritoneal dialysis, and
transplant recipients.
American Kidney Fund®
http://www.kidneyfund.org/
The American Kidney Fund leads the nation in providing charitable assistance to dialysis
patients who need help with the costs associated with treating kidney failure. In 2011,
nearly 90,000 people—almost one out of every four dialysis patients in the United
States—received assistance from the American Kidney Fund for health insurance
premiums and other treatment-related expenses.
Baxter Renal
http://www.renalinfo.com/us/resources/
Learning about kidney disease can seem overwhelming. Baxter has a variety of materials
that can help you learn more about kidney disease, your treatment options, and living
with kidney disease. These materials are available for download in either English or
Spanish.
DaVita®
www.davita.com
DaVita Inc is a leading provider of kidney care in the United States, delivering dialysis
services to patients with chronic kidney failure and end-stage renal disease (ESRD).
DaVita strives to improve patients’ quality of life by offering innovative clinical care,
integrated treatment plans, personalized care teams, and convenient health-management
services. As of June 30, 2012, DaVita operated or provided administrative services at
1,884 outpatient dialysis centers located in the United States, serving approximately
149,000 patients. The company also operated 19 outpatient dialysis centers located
in four countries outside of the United States. DaVita supports numerous programs
dedicated to creating positive, sustainable change in communities around the world. Its
Web site answers questions and provides education for people with CKD or on dialysis
and their caregivers, family members, and friends.
Dialysis Patient Citizens (DPC)
http://www.dialysispatients.org/
With more than 23,000 dialysis and predialysis patients making up its membership, DPC
is working to improve the quality of life for all dialysis patients through education and
advocacy. DPC is a nationwide, nonprofit, patient-led dialysis organization with
membership open only to dialysis and predialysis patients and their families. Its policies
and mission are guided solely by its membership.
Kidney End-of-Life Coalition
http://www.kidneyeol.org/Home.aspx
More than 320,000 people receive dialysis therapy in the United States, and more than
45% are older than 60 years of age. Despite many dialysis patients having significant
comorbid conditions that affect their care, they have a high quality of life and expect to
enjoy the extra years of life afforded by dialysis. However, this is not true for all patients.
About 20% of patients withdraw from dialysis prior to death, and many die from heart
disease, infections, and other causes while continuing dialysis. For these patients, end-oflife care is an important part of their treatment plan. This Web site is dedicated to these
patients and to all the caring staffs in hospitals, dialysis units, and hospice organizations
who are committed to helping patients and their families with end-of-life concerns.
Kidney Kitchen
http://www.kidney.org/patients/kidneykitchen/
For people with CKD at any stage, understanding how nutrition can affect their health is
critical. Kidney health-care professionals can help by providing important support and
education about dietary requirements and modifications that could potentially slow the
progression of kidney disease and improve overall health outcomes. This Web site
provides many delicious recipes, with more added on a regular basis.
Kidney School™
http://kidneyschool.org/
This Web site offers learning modules in English and Spanish and an audio book for
people with kidney disease.
Life Options
http://lifeoptions.org/
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.
National Kidney and Urologic Diseases Information Clearinghouse
(NKUDIC)
http://kidney.niddk.nih.gov/
NKUDIC is an information dissemination service of the National Institute of Diabetes
and Digestive and Kidney Diseases (NIDDK). NIDDK is part of the National Institutes of
Health (NIH), which is part of the US Dept of Health and Human Services. NKUDIC
was established in 1987 to increase knowledge and understanding about diseases of the
kidneys and urologic system among people with these conditions and their families,
health care professionals, and the general public. To carry out this mission, NKUDIC
works closely with a coordinating panel of representatives from federal agencies,
voluntary organizations on the national level, professional groups, and state health
departments to identify and respond to informational needs about kidney and urologic
diseases.
National Kidney Foundation™
http://www.kidney.org/
The National Kidney Foundation, a major voluntary, nonprofit health organization, is
dedicated to preventing kidney and urinary tract diseases, improving the health and wellbeing of individuals and families affected by kidney disease, and increasing the
availability of all organs for transplantation.
National Kidney Registry
http://www.kidneyregistry.org/?cookie=1
The mission of the National Kidney Registry is to save and improve the lives of people
facing kidney failure by increasing the quality, speed, and number of living donor
transplants in the world.
Renal Support Network (RSN)
http://www.rsnhope.org/
RSN is a nonprofit, patient-focused, patient-run organization that provides nonmedical
services to those affected by CKD. RSN strives to help patients develop their personal
coping skills, special talents, and employability by educating and empowering them and
their family members to take control of the course and management of this disease. RSN
plays a vital role in providing lawmakers and policy makers with the patients’ perspective
on the needs and capability of people with CKD.
The Kidney Trust
http://kidneytrust.org/
The Kidney Trust is a nonprofit organization that seeks to reduce the progression of CKD
through free, rapid screening in nonmedical settings and to provide financial assistance to
people affected by CKD.
The Nephron Information Center
http://www.nephron.com/
After nearly 3 decades of seeing patients with ESRD, it is apparent that it is possible to
delay or prevent much of what we deal with altogether. Several medical trials and
innovations in the last several years have confirmed these observations and form the basis
of this Web site. A major element in preventing renal illness is simply early detection,
and this requires education. The Nephron Information Center’s mission is to use the
Internet to make the public more aware of kidney disease in a sincere effort to prevent it
when possible and to help colleagues achieve good outcomes in those individuals who
already have ESRD. The center’s role is to provide as much information as possible to
patients, professionals, and the general public, with the hope that this education will
provide a motivating factor in making the necessary changes to prevent or stall CKD.
Contributed by Elaine M. Koontz, RD, LD/N
Review Date 11/12
R-0600