Living with dialysis is not something you have to do alone. There is a community of support and services available to dialysis patients and their families.
ESRD Network Services
There are 18 ESRD Networks in the United States, each under contract with the Centers for Medicare and Medicaid Services (CMS) to provide assistance for kidney patients. Click on the links below to learn more about the services provided by your ESRD Network.
ESRD NCC Community
The ESRD National Coordinating Center (NCC) is contracted by the Centers for Medicare and Medicaid Services (CMS) to support and coordinate national activities for the ESRD Network Program. The ESRD NCC’s vision is to inspire a nationwide collaboration between patients, care partners, and providers to achieve and sustain better health, better care, and lower costs for the ESRD community. Its mission is to serve as a national leader and partner in enhancing the quality of life and care for patients with kidney disease through active engagement, provision of education, and empowering the renal community to make better health choices. Click on the links below to learn more about the ESRD NCC.
NPFE LAN members strongly support CMS’s goals. These include:
- Engaging patients to be an active part of their kidney care teams.
- Promote hemodialysis catheter freedom and increased use of fistulas and grafts.
- Encouraging transplant referrals and home treatment options.
- Reducing Healthcare Associated Infections (HAI).
Each member selects a focus area, based on his or her experiences and knowledge. The three NPFE LAN sub-groups, also known as affinity groups, discuss their specific interests and work together to enhance or create new educational materials. They have also spoken on the importance of patient engagement at national conferences, including the CMS Healthcare Quality Conference. In all these efforts they provide leadership in their communities as well as nationally.
The NPFE LAN Seal is an emblem placed on patient educational materials and programs that were developed with the contribution of NPFE LAN members. All NPFE LAN resources are created with patients for patients. This seal marks materials which the NPFE LAN patients and care partner members have approved for the kidney care community. All materials that have the LAN Seal on them have been written and designed to be easy to read and use.
The video includes comments submitted by ESRD patients, reflecting on their lives with dialysis. These thoughts were read aloud by a patient panel and recorded at the National Forum of ESRD Networks 2015 Creating a Culture of Quality Conference.
News Feed: Read up on the latest announcements, articles and useful information for the kidney community!
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Renal Related Organizations
- American Association of Kidney Patients (AAKP)
- American Kidney Fund (AKF)
- American Nephrology Nurses’ Association (ANNA)
- National Kidney Foundation (NKF)
- American Society of Diagnostic & Interventional Nephrology (ASDIN)
- National Renal Administrators Association (NRAA)
- Kidney Patient News
- Coalition for Supportive Care of Kidney Patients
- Kidney & Urology Foundation of America, Inc.
- Medical Education Institute
- Renal Physicians’ Association (RPA)
- LORAC – Life Options Rehabilitation Program
- LORAC – Life Options Booklet: Employment: A Kidney Patient’s Guide to Working and Paying for Treatment (PDF)
- Kidney School
- Home Dialysis Central
- “Management of Anemia in Chronic Kidney Disease in Adults” (an educational tool from the National Kidney Foundation’s Kidney Learning System)
- Institute for Healthcare Improvement
- International Transplant Nurses Society (ITNS)
- Vascular Access Society
- Centers for Disease Control and Prevention- Diabetes Public Health Resource
- American Diabetes Association
- Juvenile Diabetes Research Foundation International
Government Agencies and Related Links
- Veterans Health Administration (VHA) Kidney Program
- Centers for Disease Control and Prevention (CDC)
- CDC Mortality and Morbidity Weekly Report
- Federal Register
- Centers for Medicare & Medicaid Services
- “Medicare and You”
- “Your Medicare Rights and Protections”
- National Center for Infectious Diseases
- National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC)
- National Kidney Disease Education Program
- United Network for Organ Sharing (UNOS)
- United States Renal Data System (USRDS)
- Women in Government, Chronic Kidney Disease Policy Resource Center
- ESRD Network Program Overview
- Medical Records Model (in PDF format)
- National Patient Safety Foundaion
- RenalNet Kidney Information Clearinghouse
- Hypertension, Dialysis, & Clinical Nephrology
- The Nephron Information Center
- MEDLINEplus Health Information: Kidney Failure and Dialysis
- National Quality Forum
- Robert Wood Johnson Foundation Promoting Excellence : End-Stage Renal Disease Workgroup Recommendations to the Field
- 2006 Dialysis of Drugs Guide
- “Normalization of Hemoglobin Level in Patients with Chronic Kidney Disease and Anemia” (New England Journal of Medicine, November 16, 2006)
- “Correction of Anemia with Epoetin Alfa in Chronic Kidney Disease” (New England Journal of Medicine, November 16, 2006)
- “Correction of Anemia – Payoffs and Problems” (New England Journal of Medicine, November 16, 2006)
Journals of Interest
- American Journal of Kidney Diseases (AJKD) http://www.ajkd.org
- Nephrology News & Issues www.nephronline.com
- Dialysis & Transplantation http://www.eneph.com
- Journal of the American Society of Nephrology http://www.jasn.org
- New England Journal of Medicine http://www.nejm.org
- Journal of the American Medical Association (JAMA) http://jama.ama-assn.org
- Annals of Surgery http://www.annalsofsurgery.com
- Renal Watch newsletter (from the National Renal Administrators Association) http://www.nraastrong.org/
- Hypertension, Dialysis, and Clinical Nephrology (HDCN) http://www.hdcn.com