Resources
Professional Resources
The following organizations provide information about kidney disease and
vascular access, as well as clinical and quality improvement-related resources.
American Association of Kidney Patients
AAKP is a national non-profit organization founded by kidney patients for
kidney patients. They strive to educate and improve the health and well-being of
patients and families by offering extensive information about chronic kidney
disease (including pediatric cases) and treatment options Their web site also
features a free program called AAKP My Health, designed to help patients manage
and track their doctor’s visits, medications and lab tests. Patients can also
view brochures, learn about educational programs and events, and sign up to
receive AAKP newsletters and policy briefs.
(800) 749-2257
www.aakp.org
American Journal of Kidney Disease
Health care providers can browse or search current and past issues of the
official journal of the National Kidney Foundation on this website.
(877) 839-7126
www.ajkd.org
American Kidney Fund
AKF is one of the nation’s top sources of direct financial assistance to kidney
patients. Eligible kidney dialysis and transplant patients can receive help
paying for expenses related to treatment, including procedures, travel,
medication and a summer enrichment program for young kidney patients. In
addition to learning about funding opportunities for patients, health care
professionals will find information about conferences, CME opportunities and AKF
fellowships.
(866) 300-2900
www.akfinc.org/fpr.asp
American Nephrology Nurses Association
ANNA is the professional organization for registered nurses who specialize in
the care of patients experiencing the real or threatened impact of renal
dysfunction. ANNA sets forth and updates standards of patient care, educates its
practitioners, stimulates and supports research, disseminates new ideas
throughout the field, promotes interdisciplinary communication and cooperation,
and monitors and addresses issues encompassing the practice of nephrology
nursing.
(888) 600-2662
www.annanurse.org
American Society of Diagnostic and Interventional Nephrology
ASDIN was founded in 2000 to promote the proper application of new and
existing procedures in the practice of nephrology with the goal of improving the
care of nephrology patients.
(601) 924-2220
www.asdin.org
American Society of Nephrology
ASN is organized and operated exclusively for scientific and educational
purposes, including enhancing the field of nephrology by advancing the
scientific knowledge and clinical practice of that discipline through
stimulation of basic and clinical investigation, providing access to new
knowledge through the publication of journals and the holding of scientific
meetings, advocating for the development of national health policies to improve
the quality of care for renal patients, cooperating with other national and
international societies and organizations involved in the field of nephrology
and using other means as directed by the Council of the Society.
(202) 659-0599
www.asn-online.org
AV Fistula First
The Centers for Medicare & Medicaid Services (CMS), in close collaboration
with key stakeholders in the renal community, is pleased to introduce a
breakthrough initiative called "AV Fistula First". The purpose is to
significantly increase the use of AV fistulas (AVF) as the primary vascular
access in all suitable hemodialysis patients.
www.fistulafirst.org
Centers for Medicare and Medicaid Services
The mission of CMS is to ensure effective, up-to-date health care coverage
and to promote quality care for beneficiaries. Its vision is to achieve a
transformed and modernized health care system, and to accomplish its mission by
continuing to transform and modernize America's health care system.
(800) 633-4227
www.cms.hhs.gov
End Stage Renal Disease Networks
The ESRD Networks are not-for-profit organizations that provide quality
improvement projects and activities for the renal community. Each Network
organization has information available for patients and providers about
treatment modalities, quality of life and the AV Fistula First initiative.
www.esrdncc.org
Medical Education Institute
MEI’s vision is to create a world where people with chronic diseases are
knowledgeable, active partners in their medical care, using treatment options
that allow them to live full, productive lives; a world where healthcare
professionals take pride in empowering patients to live as independently as
possible.
(608) 833-8033
www.meiresearch.org
Projects of MEI include:
- Home Dialysis Central: providers and kidney patients can see a complete
listing of U.S. home dialysis centers, information on types of home dialysis
and updates on home dialysis technology and equipment. Resources specific to
providers include clinical outcomes, research briefs and information about
vascular access.
(608) 833-8033
www.homedialysis.org
- Life Options: 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. Materials cover multiple CKD issues
including treatment options, vocational rehabilitation, and how-to manuals
for the professional. Many of the materials can be downloaded.
(800) 468-7777
www.lifeoptions.org
- Kidney School: Kidney School is an interactive, web-based learning
program in 20-minute modules for patients. 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. There is also learning opportunities available for the
professional and continuing education credits can be earned.
www.kidneyschool.org
National Association of Nephrology Technicians/Technologists
NANT is a nonprofit professional organization founded in 1983. NANT was
established to improve the quality of care in the dialysis industry and promote
education, recognition through certification and licensing, job security and
employment opportunities for nephrology technicians.
www.nant.biz/store/
National Kidney and Urologic Diseases Information Clearinghouse
This clearinghouse website provides detailed information about treatment
options, including hemodialysis, peritoneal dialysis and kidney transplantation,
for patients with kidney failure. The site also includes the NIDDK reference
collection, a database of health education materials for patients and providers.
The site is a service of the National Institutes of Health (NIH).
(800) 891–5390
www.kidney.niddk.nih.gov
National Kidney Disease Education Program
An initiative of NIH, NKDEP seeks to reduce the morbidity and mortality
caused by kidney disease. The website features a section for health
professionals that includes information about the risk factors, prevention,
diagnosis and treatment of kidney disease. The website also includes tools for
estimating kidney function, patient care guidelines and patient education
materials.
(866) 454-3639
www.nkdep.nih.gov/professionals/index.htm
National Kidney Foundation, Inc.
NKF seeks to prevent kidney and urinary tract diseases, improve the health
and well-being of individuals and families affected by these diseases, and
increase the availability of all organs for transplantation. The foundation’s
Kidney Learning System™ provides healthcare professionals with clinical tools,
free continuing education activities and online education resources along the
continuum of care. KLS has extensive print and online resources for patients,
families and the public about CKD, including a GFR calculator, CKD Clinical
Action Plan and K/DOQI Clinical Practice Guidelines. NKF also has several
professional organizations that support the mission of making lives better for
those with chronic kidney disease through development of policy, education,
outreach and research:
- The Council of Nephrology Nurses and Technicians (CNNT)
- The Council on Renal Nutrition (CRN)
- The Council of Nephrology Social Workers (CNSW)
(800) 622-9010
www.kidney.org
National Renal Administrators’ Association
NRAA is a nonprofit organization representing professional managers of
dialysis facilities and centers throughout the United States. NRAA members
include renal administrators, nurse managers, nurses, medical directors,
technicians and financial/billing managers for dialysis clinics, which provide
life-sustaining dialysis care to the majority of Medicare End Stage Renal
Disease (ESRD) patients. NRAA represents the interests of ALL
facilities - hospital-based and freestanding, for-profit and non-profit,
independent and chain, urban and rural. Through education, networking,
information sharing and governmental representation, NRAA strives to ensure
competence and enhance professionalism throughout the renal community.
(928) 717-2772
www.nraa.org
Nephron Information Center
This website contains comprehensive information for health care providers in
the renal community, including a search engine for dialysis units, and links to
FDA drug alerts and clinical trials. Providers can search for transplant centers
and directly access Medline and pharmacology databases.
www.nephron.com
Renal Physicians Association
RPA is a national medical specialty association, whose members include
physicians and practice managers in the field of nephrology. RPA offers coding
and billing resources, updates on legislative priorities and advocacy efforts,
and an extensive list of nephrology links.
(301) 468-3515
www.renalmd.org
Society for Vascular Surgery
SVS is a not-for-profit association that seeks to advance excellence and
innovation in vascular health through education, advocacy, research and public
awareness. SVS is the national advocate for 2,400 vascular surgeons dedicated to
the prevention and cure of vascular disease.
(800) 258-7188
www.VascularWeb.org.
Society for Vascular Ultrasound
Founded in 1977, SVU (formerly the Society of Vascular Technology) is the
only professional organization completely dedicated to the advancement of
noninvasive vascular technology used in the diagnosis of vascular disease. SVU
is comprised of more than 4,300 vascular technologists, physicians, nurses, and
other allied health professionals. SVU offers educational programs,
publications, networking opportunities, government representation, and more. The
mission of SVU is to represent the best interests of SVU members and promote
quality vascular ultrasound services by providing educational, scientific and
literary activities to our members, patients and the public.
(301) 459-7550
www.svunet.org
Society of Interventional Radiology
The Society of Interventional Radiology is a national organization of
physicians, scientists and allied health professionals dedicated to improving
public health through disease management and minimally invasive, image-guided
therapeutic interventions.
www.sirweb.org/
United Network for Organ Sharing
The UNOS Organ Center is available 24 hours a day, every day of the year, to
facilitate organ sharing among transplant centers, organ procurement
organizations and histocompatibility laboratories across the U.S. The primary
functions of the Organ Center are to:
- assist in placing donated organs for transplantation
- assist in gathering donor information and running the donor/recipient
computer matching process
- assist with transportation of organs and tissues for the purposes of
transplantation
- act as a resource to the transplant community regarding organ-sharing
policies
(804) 782-4800
www.unos.org
United States Renal Data System
The USRDS is a national data system that collect, analyzes, and distributes
information about ESRD in the United States. The USRDS staff collaborate with
the Centers for Medicare and Medicaid Services (CMS), UNOS, and the ESRD
Networks, sharing datasets and actively working to improve the accuracy of ESRD
information.
(888) 998-7797
www.usrds.org
Veterans Administration Kidney Diseases Program
This Veterans Administration website has resources and information on
treating kidney disease, including Pre-End Stage Renal Disease Clinical Practice
Guidelines and other useful information.
www.va.gov/kidney/
Patient Resources
The following organizations provide information for patients and families
about vascular access and kidney disease.
American Association of Kidney Patients
AAKP is a kidney organization run by kidney patients. It has many brochures,
newsletters, and resources to help people with chronic kidney disease (CKD)
manage their lives. Patients can learn about educational programs, events, and
policy briefs.
(800) 749-2257
www.aakp.org
American Kidney Fund
AKF is the #1 source for financial assistance to kidney patients. AKF provides
free pharmacy products as well as grants to help patients with costs not covered
by other sources. AKF also provides education and outreach to people who are at
risk for kidney disease.
(866) 300-2900
www.kidneyfund.org
AV Fistula First
First Sponsored by CMS, this website is devoted to everything about AV fistulas.
It has information for both patients and professionals.
www.fistulafirst.org
Dialysis Facility Compare
Sponsored by the Centers for Medicare & Medicaid Services (CMS), this website
allows patients to find and compare information about dialysis facilities in
every state. Patients can search for facilities by name, city or state.
Medicare’s coverage for dialysis is also discussed.
www.medicare.gov/Dialysis/Home.asp
Dialysis Patient Citizens
DPC is an independent, dialysis patient organization. It is dedicated to
improving dialysis patients' quality of life. DPC advocates for dialysis and
pre-dialysis patients and promotes favorable public policy. It works to improve
the partnership between patients and caregivers.
(866) 877-4242
www.dialysispatients.org
Home Dialysis Central
This website helps you to find home dialysis centers near you. The site provides
education about the types of home dialysis, updates on technology and equipment,
and discussion boards to help you connect with other dialysis patients.
(608) 833-8033
www.homedialysis.org
Kidney Patient News
The site offers information and resources for kidney patients and their
families, including treatment options and vascular access types, diet and
nutrition, and emergency and disaster preparation.
(317) 257-8265
www.kidneypatientnews.org
Kidney School
Kidney School is an interactive, web-based learning program. It was designed to
help people understand kidney disease and its treatment, adjust to kidney
disease, make good medical choices and live as fully as possible. Click on the
table of contents to pick the topics that most interest you.
www.kidneyschool.org
Life Options Rehabilitation Program
Life Options provides free fact sheets, videos and booklets to help people live
long and well with kidney disease. The site includes many resources about
vocational rehabilitation.
(800) 468-7777
www.lifeoptions.org
National Kidney Disease Education Program
This site includes many resources about kidney disease and testing. Educational
materials can be downloaded or ordered directly.
(866) 454-3639
www.nkdep.nih.gov
National Kidney and Urologic Diseases Information Clearinghouse
This organization provides detailed information about CKD and treatment options,
including home dialysis and kidney transplantation. The site also includes the
NIDDK reference collection, a database of health education materials for
patients and providers.
(800) 891–5390
www.kidney.niddk.nih.gov
The National Kidney Foundation, Inc.
NKF has many educational resources about CKD and urinary tract diseases. The
foundation’s website provides kidney patients with access to the latest news,
events and advocacy efforts.
(800) 622-9010
www.kidney.org
Renal Support Network
RSN is a nonprofit, patient-focused, patient-run organization that provides
non-medical services to those affected by CKD and strives to motivate and assist
patients in developing their personal coping skills, special talents, and
employability by educating and empowering them (and family members) to take
control of the course and management of their disease. RSN helps people with
kidney disease become self-sufficient thru education, advocacy, and hope for a
better tomorrow.
(800) 579-1970 – HOPEline, for peer support and info.
(866) 903-1728
www.rsnhope.org
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