Resources for Kidney Patients
The following links are to organizations and sites that we believe will be of benefit to our patients and their physicians. Below you will find a brief description of many of these sites. They are divided into three categories:
Kidney Specific Organizations
American Association of
Kidney Patients (AAKP)
www.aakp.org The American Association
of Kidney Patients (AAKP) exists to serve the needs, interests, and
welfare of all kidney patients and their families. The site offers information
on education, membership, and the AAKP Patient plan, which provides
kidney patients and their family members with a comprehensive guide
to kidney disease and treatment.
American Kidney Fund
(AKF)
www.akfinc.org The American Kidney
Fund (AKF) is a national voluntary health organization providing direct
financial assistance for the benefit of kidney patients supported
by comprehensive educational programs, clinical research and community
service projects. The AKF was recently named as one of the “Top
Ten Best Health Charities” by the Physicians Committee for Responsible
Medicine. Site features include a newsroom, description of programs,
kidney disease facts, a shopping mall, a lifestyle section, and items
for professionals.
American Society of Pediatric Nephrology
www.aspneph.com The American
Society of Pediatric Nephrology (ASPN) was founded in 1969 to promote
optimal care for children with renal disease and to disseminate advances
in the clinical practice and basic science of pediatric nephrology.
iKidney.com
www.ikidney.com iKidney.com is
a worldwide kidney disease community Web site. The site, which is
sponsored by an educational grant from Watson Pharma, Inc., provides
patient education articles focusing on lifestyle assistance, as well
as professional resource materials and ongoing updates on renal nutrition
and disease. Additional features on the site—which is geared
toward patients, their family members, and renal care professionals—include
a speakers directory, a directory of dialysis facilities, a calendar
of renal-related events, renal recipes, a marketplace of patient-oriented
products, and a “Kids Corner.” Long-time renal patient
advocate Lori Hartwell—author of the book Chronically Happy:
Joyful Living in Spite of Chronic Illness—is the publisher of
iKidney.com.
National Kidney Foundation (NKF)
www.kidney.org The National Kidney
Foundation Web site provides information on organ donation, renal
and transplant public policy, and professional education programs.
Message boards enable transplant recipients and donor families to
communicate with peers and friends. Additionally, the site contains
a newsroom with NKF's most recent press releases and fact sheets highlighting
a variety of kidney/urology topics and key statistics. Membership
and meeting information for physicians and for NKF's allied health
professional and constituent councils is also available. An
online newsletter, the Electronic Kidney, offers stories on
breaking medical and legislative news, patient profiles, and an events
calendar for the renal community. The CyberNephrology page is
NKF's gateway to Internet based aids to the practice of nephrology,
enabling renal care professionals to share information, concerns,
and case studies with colleagues around the world.
Kidney Related Information Sites
Dialysis & Transplantation
www.eneph.com Dialysis & Transplantation's
own Web site for the international renal care community. Features
include an archive of clinical articles as presented in D&T,
including the full text, abstract, and all associated tables, figures,
and references. The site also houses: "The List,"
D&T's exclusive, international directory of dialysis centers
that accept traveling patients; a Renal Care News section; a Calendar
section; and a 6-year Index of Articles that have appeared in D&T,
broken down by Author and Subject.
RenalInfo
www.renalinfo.com RenalInfo
offers information about kidney failure, including causes, symptoms,
tests, ideas to help maintain health, and a comprehensive presentation
of kidney disease treatment choices.
Hypertension, Dialysis, and Clinical
Nephrology (HDCN)
www.hdcn.com HDCN provides up-to-date,
selected information on renal disorders and their treatment (hemodialysis,
peritoneal dialysis), and about hypertension, dialysis, and clinical
nephrology topics. HDCN is a site for physicians and nurses who
treat patients with renal disease. Here physicians and nurses
can find answers to frequently asked questions pertaining to hypertension,
dialysis, and nephrology papers, abstracts, and meeting presentations.
Kidney & Urology Foundation
of America
www.kidneyurology.org The Kidney
and Urology Foundation of America is a national, not-for-profit organization
dedicated to helping people avoid the debilitating effects of kidney
and urologic diseases.
Kidney School
www.kidneyschool.org Kidney
School is an interactive, Web-based learning program in 10-minute modules.
It was designed to help people learn what they need to know to understand
kidney disease and its treatment, adjust to kidney disease, make good
medical choices, and live as fully as possible. Visitors to the site
decide which modules to access and when, so learning is entirely individualized.
Life Options Rehabilitation
Program
www.lifeoptions.org The Life Options Rehabilitation Program is dedicated
to helping people live long and live well despite kidney disease. Life
Options is actively engaged in research, partnering with other organizations,
offering technical support and developing high-quality, research-based
educational materials for kidney patients and renal professionals. Sections
include the Showcase of Ideas, Patient Community, Kidney Disease Info,
a glossary, and free booklets on exercise, renal rehabilitation, insurance,
finance, and much more. All Life Options materials are free and can
be downloaded or ordered.
National Institute of Diabetes and
Digestive and Kidney Diseases (NIDDK)
www.niddk.nih.gov Sponsored by
the National Institute of Diabetes and Digestive and Kidney Diseases,
this site provides many patient education materials on kidney and urologic
disorders, as well as on diabetes, digestive disorders, and nutrition.
Also provided are research resources and funding information for biomedical
investigators, recent news releases, and links to other U.S. government
sites on the Web.
Nephron Information Center
www.nephron.com The Nephron Information
Center Web site was designed as a tool to help the public, the patient,
and the physician advance their knowledge and better understand kidney
disease, and more importantly, to help address its major causes—diabetes
and hypertension. This site offers information news and information
about legislation, renal and government organizations, research grants,
and clinical trials. It was designed to help newly diagnosed patients
understand kidney disease, and what role they can play in delaying or
even preventing its progression. The site also offers Nephroquest, which
gives patients an opportunity to ask questions about kidney disease,
calculators, conversion tables, and embedded links to the National Library
of Medicine.
NephroWorld
www.nephroworld.com A virtual
community and marketplace for professionals, patients, organizations,
and companies related to nephrology.
Renal Support Network
www.renalnetwork.org The Renal
Support Network is a nonprofit organization dedicated to facilitating
communication among people who live with kidney disease and their families.
RenalWEB
www.renalweb.com RenalWEB is the
most visited dialysis-related Web site, and is the "daily newspaper"
for the dialysis and nephrology community. RenalWEB specializes
in organizing breaking news, medical resources, product information,
and other Web sites. Visitors can explore issues and current events
at any level, from brief overview to in-depth analyses. Features
include the Dialysis Yellow Pages, classified job ads, discussion forums,
resource listings for dialysis outcomes and topics, up-to-the-hour stock
quotes, and more. RenalWEB is also the webmaster for the National
Renal Administrators Association (www.nraa.org) and the National Association
of Nephrology Technicians/Technologists (www.dialysistech.org).
U.S. Renal Data System (USRDS)
www.usrds.org The USRDS is a national
data system that collects, analyzes, and distributes information about
end-stage renal disease in the U.S. The USRDS is funded directly
by the National Institute of Diabetes and Digestive and Kidney Diseases
(NIDDK) in conjunction with the Centers for Medicare & Medicaid
Services (CMS). The USRDS Coordinating Center is operated under
a contract with the Minneapolis Medical Research Foundation.
General Health Information
American Diabetes Association
www.diabetes.org The American
Diabetes Association is the nation's leading nonprofit health organization
providing diabetes research, information and advocacy. Founded in 1940,
the American Diabetes Association conducts programs in all 50 states
and the District of Columbia, reaching hundreds of communities.
Food and Drug Administration
(FDA)
www.fda.gov Provides news about recent
FDA approvals for marketing or testing of drugs and medical devices.
A search engine allows the user to find information on drugs or devices
to treat such conditions as renal failure.
Lupus Foundation of America
www.lupus.org With nearly 300 chapters,
branches and support groups in 32 states, the Lupus Foundation of America
(LFA) is the nation's leading non-profit voluntary health organization
dedicated to finding the causes and cure for lupus.
TransWeb
www.transweb.org TransWeb is a
not-for-profit educational Web site serving the world transplant community.
Based at the University of Michigan, TransWeb features news and events,
real people's experiences, the top 10 myths about organ donation, a
donation quiz, and a large collection of questions and answers, as well
as a reference area with everything from articles to videos. For
teens, TransWeb features "The Transplant Journey" - a multimedia trip
through the transplant process, including the donor family's point of
view. A comprehensive subject index and the ability to search
the site make the TransWeb useful for a broad audience.
U.S. National Library of
Medicine (NLM)
www.nlm.nih.gov The NLM is the
world's largest medical library, providing health information, library
services, research programs, and exhibits. The MEDLINE database, consisting
of more than 11 million references and abstracts from scientific journals.
PubMed is used and provides links to full-text articles and other related
resources. MEDLINE Plus organizes the information into health-related
topics, provides drug information, medical dictionaries, directories
of doctors and hospitals, and many other resources.