Patient & Family Council
Educational and Supportive Resources
The National Kidney Foundation’s Patient and Family Council offers a number of resources for kidney patients and their families. Click on any of the links below to learn more.
Chronic Kidney Disease (CKD), Dialysis, Transplant
Educational and Supportive Tools
Coffee House Conversation- Hope and Main
- Kidney Learning System
- PFC Message board
- NKF Catalog
- NKF Kidney Camp Directory
Resources
- Caregivers
- Center for Foodborne Illness Research and Prevention (CFI)
CFI is a national non-profit organization dedicated to preventing foodborne illnesses through research, education, and advocacy. Foodborne illness is a serious public health issue. Some foodborne pathogens like E.colican result in illnesses like Hemolytic Uremic Syndrome (HUS), which is characterized by continuing organ failure. In fact, HUS caused by E.coli, along with other foodborne pathogens, is the leading cause of acute kidney failure among children in the U.S. - Dialysis Facility Compare
- End Stage Renal Disease (ESRD) Networks
- Fistula First: Information about vascular access
- The Foundation for Children with Atypical HUS
This interactive site serves as a support group and general information hub for all aHUS (Atypical Hemolytic Uremic Syndrome) patients, families, and supporters. aHUS is more troubling than "typical" HUS because it is characterized by recurring episodes, permanent kidney failure, and lifelong complications. There is still very little understanding of the concrete cause of this rare disease, but there is thought that it may due to mutated genes and inheritance. Sometimes though, it just comes from nowhere. www.atypicalhus.org - Living Donor Financial Assistance Program
- NKF Kidney Health Brochures
- NKF's "People Like Us": Long-term Care Residence Chronic Kidney Disease Checklist (PDF* - 581kb)
- Older Adults
- Preparing for an Emergency
- Social Networking Opportunities: Connect with others through the NKF’s Facebook page and sign up to receive NKF’s Twitter updates!
- State Kidney Programs
- Questions Children Ask: Helping Children Adjust When a Parent Has Kidney Failure
- Taking Control: Money Matters For People With Chronic Kidney Disease
- Waiting for a Transplant
Written by and for recipients considering Transplantation, Living Donation, The Experience of Waiting, End-of-Life Decisions, Other Sources of Help”
Publications
- Dialysis Patient's Bill of Rights and Responsibilities (PDF* - 663kb)
- Family Focus Newspaper
Current Issue (PDF* - 2.1mb)
Back Issues
Family Focus Voices Let your voice be heard!
- Kidney Care: The CKD Newsletter
Current Issue
Back Issues
- Transplant Chronicles Newsletter
Current Issue
Back Issues
