Internet Resources for Parents

Listed are various web sites with information regarding kidney disease. Most of the information is related to children with kidney disease, but some of the information deals with both adults and children. As with any material provided to the public on the internet, the information on these web pages are general thoughts and guidelines. These may or may not be specific to your child's illness and you are encouraged to discuss the information you learn from these sites with your care team (including doctors, nurses, social workers, psychologists and dietitians).  View

Guts Gear Foundation
The Guts Gear Foundation was started by John Cook, a former pediatric dialysis patient. The Foundation is dedicated to bringing public awareness to children with renal failure and supplying educational and entertainment items to children during dialysis treatments. They have already provided gear to 30 units!

National Kidney Foundation (NKF)
This is an overall useful tool for parents to find information and potentially become active in local events.

American Association of Kidney Patients (AAKP)_
A valuable web site with information coming from the perspective of patients and caregivers. The information provided helps deal with the emotional challenges of having kidney disease as a child. This web site also provides information on how to become an advocate for people with kidney disease. 

National Institute of Diabetes & Digestive & Kidney Disease/National Institute of Health (NIDDK/NIH)Resources:

The Cystinosis Research Foundation

The Cystinosis Research Network

Polycystic Kidney Disease Foundation (PKD)

Providing information for parents and carers about kidney conditions in babies, children and young people.
Read about conditions, tests, treatments and supporting information

Dialysis Clinic, Inc. (DCI) - Video

ASPN Foundation