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For Patients and Families

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The Network provides services to help ensure transplant and end stage renal disease (ESRD) patients are receiving the best care possible. We do this by:

  • Working with dialysis and transplant facilities to improve the quality of care
  • Investigating patient grievances
  • Providing patient and provider education
  • And more!

We encourage you and your family to learn more about ESRD and ways that you can become involved in your treatment by looking at topics on this website. Equally important, we urge you to talk to your care team (physicians, nurses, social workers, dietitians, and technicians) and get involved in the decision-making process so that you will find your own best approach to treatment.

Video iconThe National Coordinating Center (NCC) created a video of a member of the Network's Patient Advisory Council (PAC) that features their ESRD journey, where they garner strength from, their work with the Network, and their hope for other patients.

View Otilia's Story

New Resource: Getting Back to Me: A Goal-Setting Journey (PDF)

Do you have a goal you would like to achieve? The Getting Back to Me: A Goal-Setting Journey is a workbook that can assist you with identifying personal goals and setting a plan to achieve them. This resource was developed by kidney patients and family members and designed to help restore a sense of dignity and increase self-esteem through goal-setting.

Advance Care Planning

Caring Connections

Caring Info is a program of the National Hospice and Palliative Care Organization that provides free resources to help people make decisions about end of life care and services.



Coalition for Supportive Care of Kidney Patients

The Coalition for Supportive Care of Kidney Patients (CSCKP) brings together like-minded people who care deeply about the quality of compassionate, supportive care for kidney patients. The coalition offers professionals from many disciplines and laypersons who are working for true patient-centered care that values quality of life.



End of Life Care

Coalition for Supportive Care of Kidney Patients

The Coalition for Supportive Care of Kidney Patients brings together like-minded people who care deeply about the quality of compassionate and supportive care for kidney patients. 



Florida Advanced Directives

Every competent adult has the right to make decisions concerning his or her own health, including the right to choose or refuse medical treatment. This website contains health care advance directives education, information, and forms.



ESRD and Health Education

Shatter the Myths About Depression

This poster helps to dispel myths about the depression that can accompany a chronic disease such as end stage renal disease (ESRD).



Pneumococcus Vaccine Fact Sheet

Patients with chronic kidney disease are at increased risk of pneumococcus infection. Read this fact sheet to learn more about the pneumococcal vaccine.



Financial Assistance

Social Security - Understanding the Benefits

The Social Security Administration wants you to understand what Social Security can mean to you and your family’s financial future. This publication, Understanding The Benefits, explains the basics of the Social Security retirement, disability, and survivors
insurance programs.



Financial help for Treatment of Kidney Failure

Kidney failure treatment - hemodialysis, peritoneal dialysis, and kidney transplantation - is costly and most people need financial help. Find out about your options for assistance.



Find and Compare Facilities

Dialysis Facility Compare

Dialysis Facility Compare (DFC) is a service of the Centers for Medicare & Medicaid Services (CMS), an agency of the U.S. Department of Health and Human Services (DHHS). DFC helps you find detailed information about Medicare-certified facilities, compare the services and the quality of care that facilities provide, get other resources for patients and family members who want to learn more about chronic kidney disease and dialysis, and get links to learn more about how Medicare covers people with ESRD.



Dialysis Facility Compare - The National Forum of ESRD Networks

This site helps you find and compare Medicare-certified dialysis facilities. You can see how each facility compares to others based on star ratings, services offered, and quality of care. This tool is especially helpful if you need to find a temporary facility.



Going Back to Work or School

A Kidney Patient's Guide to Working and Paying for Treatment

This is a resource from Life Options, a program to help people live long and live well with kidney disease. This booklet is divided into three parts: Paying for treatment of kidney disease, living productively with kidney disease, and resources for individuals with kidney disease.



A Practical Guide for People with Disabilities Who Want to Go to College

This guide helps people with disabilities plan for attending  college.



Healthy Living

The Little Book About Kidneys: A Guide for Children About Kidney Disease and Treatment

The Little Book About Kidneys by Victoria Hanson and illustrated by Jenny Tulip, will help you talk to young children about your kidneys and the treatments you may experience. It is intended to support you in explaining your kidney failure to children. 



SmokeFree.gov - Quit Smoking Today!

This website provides information and resources about how to stop smoking.



ICH CAHPS

ICH CAHPS

The official website for news and information about the ICH CAHPS Survey.



ICH CAHPS: It's All About You!

This informational one-page provides a simple overview of the ICH CAHPS survey process. English Spanish



Infection Prevention

Vaccines for People on Dialysis

This flyer provides recommended immunizations for people on dialysis.



Bloodstream Infection Prevention

Patients who undergo dialysis treatment have an increased risk of infection. They are at a high risk for infection because the process of hemodialysis requires frequent use of dialysis catheters or the insertion of needles to access the bloodstream. Additionally, hemodialysis patients commonly have...



Medicare Coverage

Centers for Medicare & Medicaid Services (CMS)

The Official U.S. Government website for Medicare.



Medicare Coverage of Kidney Dialysis and Kidney Transplant Services

This official booklet contains the basics of Medicare, how Medicare helps pay for kidney dialysis and kidney transplants and where to get help.



Network Podcasts

Nutrition and Diet

Anemia

Anemia is very common in kidney patients. If left untreated, it can lead to loss of energy, headaches, trouble sleeping, dizziness, shortness of breath, lack of appetite, and a rapid heart rate. This fact sheet provides valuable information for dialysis patients.



Fluid Management

Kidneys are instrumental in removing excess water in the body, so when your kidneys don’t work, it is harder to keep the right fluid balance. The right balance is important, because if you gain too much fluid, you may have: Swelling in your face, hands, and feet Headaches and low...



Patient Education & Engagement Representative (PEER) Program

What is Patient Engagement? (Video)

Created by the Center for Advancing Health (CFAH).  Used with permission.



PEER Program Brochure

This brochure provides information about becoming a PEER volunteer for your dialysis facility.



Patient Newsletters

December 2020 Patient Newsletter

This December edition of the Patient Newsletter highlights how patients can contact the Network with concerns about their treatment, including how to do so anonymously, home dialysis treatment options, and how patients can volunteer with the Network.



December 2020 Patient Newsletter Spanish

This Spanish-language December edition of the Patient Newsletter highlights how patients can contact the Network with concerns about their treatment, including how to do so anonymously, home dialysis treatment options, and how patients can volunteer with the Network.



Patient Organizations

Online and Telephone Support Group Resources

This document provides a list of and links to online and telephonic resources that specialize in kidney disease. Many offer education, as well as the opportunity to connect with other end stage renal disease (ESRD) patients, family members, and/or caregivers through discussion forums and subscription-based email lists.



American Association of Kidney Patients

The American Association of Kidney Patients is recognized as the leader for patient-centered education – continually developing high quality, professionally written, edited and reviewed educational pieces covering every level of kidney disease.



Patient Rights and Responsibilities

Patient Services

Dialysis Facility Compare (Spanish)

Dialysis Facility Compare (DFC) is a Centers for Medicare & Medicaid Services (CMS) website that helps you learn about specific dialysis clinics and the care they provide.



Facilitating an ESRD Support Group 101

This document defines what a support group is and provides simple steps for starting one, as well as listing links to resources for additional reference.



Pediatric Information

Is My Child At Risk for Kidney Disease?

Some diseases and conditions put children at risk for kidney disease. A urine test is used to check for kidney disease before symptoms appear. Read more to learn about risk factors, the urine test, and treatment for kidney disease.  



Peer Mentoring

Peer Mentoring: A Valuable Resource for New Dialysis Patients - Network 15

Share this document, created by the Network 15 Patient Advisory Council (PAC), with your patients who have questions about peer mentors; what they are and what they are not. It addresses:

  • What essential values a peer mentor must have
  • What Makes a peer mentor valuable
  • What the responsibilities of a peer mentor are
  • What a peer mentor is not



Prescription Drug Coverage

University of the Pacific Thomas J. Long School of Pharmacy and Health Sciences Outreach

Each outreach event will also provide many other services that beneficiaries can take advantage of and have included: vaccinations, blood pressure testing, diabetes screening, cholesterol testing, bone density testing, and much more.



Medicare Part D

Learn about how to get Medicare Part D drug coverage, what drug plans cover, costs for Medicare drug coverage, how Medicare Part D works with other insurance, and the enrollment dates.



Tools for Dealing with Depression

The National Forum of ESRD Networks Dialysis Depression Toolkit

The Forum of End State Renal Disease (ESRD) Network’s Kidney Patient Advisory Council (KPAC) has developed the Dialysis Depression Toolkit to help patients who feel they may be experiencing depression. This toolkit was designed BY patients and FOR patients and with contributions by professional collaborators. the Toolkit helps to explain depression and provides information on how to find help.



Treatment Options

Choosing a Treatment That's Right for You

This booklet provides information on how to choose the best treatment option for YOU.



Choosing a Treatment That's Right for You - Spanish

The Spanish language version of this booklet provides information on how to choose the best treatment option for YOU.



Vaccinations

Hepatitis B: What You Need to Know

This is a fact sheet about hepatitis B. It provides what you need to know about it and why you should get vaccinated for it. 



Hepatitis B: What You Need to Know - Spanish

This is a fact sheet about hepatitis B. What you need to know and why you should get vaccinated.



Vascular Access

Vascular Access

If you are on hemodialysis, a vascular access is the site from which blood can be safely removed and returned to your body. There are both temporary and permanent vascular accesses.



WANTED: Permanent Access Angels

This document tells you about how you can help other patients by sharing your experiences with getting, using, and maintaining your permanent access.



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