Internet resources for Parents of Children with Chronic Kidney Disease

A. General Information sites
B. Email discussion groups for Patients
C. Sites about renal transplantation
D. Disease-specific web sites
E. Information about transitioning to adulthood and adult specialty care

General Information sites
Note: This site can be used to locate dialysis units that provide dialysis to children (check “pediatrics” as a search criterion). However, information on this site comes from the ESRD networks, which includes adult units that provide dialysis to children. If you are a parent, you may want to check with your child’s regular physician before contacting a unit identified by using this site to see if your child’s care in that unit will be supervised by a pediatric nephrologist. A comprehensive list of pediatric dialysis programs is currently under development by the ASPN.
The Nephron Information Center is an educational resource for people who have or know people who have kidney disease. It is also a resource for health care professionals who guide patients and their families to the best treatment option for them. This information will empower patients with knowledge they need to make an informed decision about their kidney healthcare.  
School is an interactive, web-based learning program in 20-minute modules. 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. This is an excellent program for older children, adolescents and parents.  These 20 minute modules can be done by the parent and child together to stimulate discussion between the parent and child regarding their kidney disease.

You decide which modules to visit and when - so what you learn is entirely up to you.         
Kidney Options is an educational resource for people who have or know people who have kidney disease. Kidney Options is also a resource for health care professionals who guide patients and their families to the best treatment option for them. This information will empower patients with knowledge they need to make an informed decision about their kidney healthcare. is designed to provide information about kidney diseases in children.
The government’s site on kidney and related diseases. This website provides one or two page discussions about various kidney diseases in both children and adults.    
This web page is by the 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 website also provides information on how to become an advocate for people with kidney disease.
The American Kidney Fund provides direct financial assistance to kidney patients in need and education for those with and at risk for kidney disease.
The patient-oriented section of the National Kidney Foundation's site. The NKF provides educational materials, services, and community resources for both patients and professionals.
A project supported by the Wellcome Trust in the United Kingdom designed to provide online patient education about kidney disease.
Website of the Nemours foundation. This web site has good info for parents about CKD and other childhood disorders.
Listing of organizations and other resources by the National Health Information Center, U.S. Department of Health & Human Services.
A Canadian based web page to provide resources and information for children with kidney disorders.
Genetics Home Reference is a National Institute of Health web page that provides patient information about genetic diseases that affect the kidney. Some examples include Alport Syndrome, Hyperoxaluria and Polycystic Kidney Disease.
This website is based out of University of Alberta, Canada. It offers educational material and online discussion groups that provide information and support to patients with kidney disease.
TTMed Urology is a fully integrated medical education portal used by specialist physicians, general practitioners, healthcare professionals, educators and students to stay abreast of new developments in urology

Email discussion groups for Patients
DIALYSIS (In the body type: subscribe DIALYSIS)

IGA Nephropathy  (Follow instructions listed)

KidneyDisease for adult patients with renal disease (Follow instructions listed)

NephKids This is a list serve created by a group of concerned families, patients and medical caregivers sharing information and experiences with the purpose of helping children and adolescents with kidney disease. The list serve is open to adult family members, mature adolescent patients, physicians, nurses and other members of the care team. Individual medical advice will not be given nor will specific physicians be recommended.(Follow instructions listed)

PKD a patient’s email discussion group for polycystic kidney disease. Leave the subject heading blank, and on the first message line, type: "subscribe pkdsupportgroup."

TRNSPLNT - transplant patient discussion group (In the body type: subscribe TRNSPLNT)

KID_COMM - for parents and caregivers of children with kidney disease. (follow instructions listed)

KIDTALK - for kids with kidney disease. (follow instructions listed)

KIDTALK2 - for kids and young teens who have brothers or sisters with kidney disease. (follow instructions listed)

YAKTALK - for teens with kidney disease.

Sites about renal transplantation
A site of the United Network for Organ Sharing (UNOS) designed to provide all kinds of transplant information.
All about transplantation and donation.
Scientific Registry of Transplant Recipients (SRTR) web site. The SRTR supports the ongoing evaluation of the scientific and clinical status of solid organ transplantation in the United States.
The Children's Organ Transplant Association provides fundraising assistance for children.
Coalition on Organ Donation
Donor website
JRI is a nonprofit organization dedicated to educating the public about the need for organ and tissue donation through film, educational outreach and the web.
Transplantation and organ donation information and resources for transplant candidates, recipients, donors and their families.
The U.S. Transplant Games is a four-day athletic competition among recipients of organ transplants. Competition in the U.S. Transplant Games is open to anyone who has received a lifesaving solid organ transplant--heart, liver, kidney, lung, and pancreas. Bone marrow recipients are also eligible to participate. As much as the Games is an athletic event that calls attention to the success of organ and tissue transplantation, it is also a celebration of life among recipients, their families and friends.

Disease-specific web sites
The Alport Syndrome Foundation is an organization formed in 2007 by families affected by this genetic kidney disease. /a>
Home of the International Pediatric Hypertension Association. Contains general information about hypertension in children and its treatment.
The Nephcure foundation supports research supporting the cause of nephrotic syndrome and FSGS, improve treatment and find the cure.
The PKD Foundation is the only organization, worldwide, devoted to improving clinical treatment and discovering a cure for Polycystic Kidney Disease (PKD).
Site of the Oxalosis & Hyperoxaluria Foundation, contains useful information about oxalosis and hyperoxaluria
The Cystinosis Foundation is a nonprofit organization formed with the objectives of raising awareness among the general public and the medical community, as well as raising funds for research into the causes of this rare metabolic disease.
This website contains a collection of information about Prune Belly Syndrome which is also known as Eagle-Barrett Syndrome. The Prune Belly Syndrome Network, Inc. provides support for those who have Prune Belly, their families, friends and the health care professionals who treat them. The information contained in this site is designed to enhance, not replace, the relationship that exists between our visitors and their existing physicians.  

Information about transitioning to adulthood and adult specialty care
The Healthy and Ready to Work initiative promotes a comprehensive system of family-centered, culturally competent, community based care for children with special health care needs who are approaching adulthood and may need assistance in making the transition from pediatric to adult health care and to postsecondary education and/or employment.
The University of Washington Adolescent Health Transition Project is designed to help smooth the transition from pediatric to adult health care for adolescents with special health care needs.
Family Voices, a national grassroots network of families and friends, advocates for health care services that are family-centered, community-based, comprehensive, coordinated and culturally competent for all children and youth with special health care needs; promotes the inclusion of all families as decision makers at all levels of health care; and supports essential partnerships between families and professionals.
TThe Adolescent Employment Readiness Center (AERC) offers a variety of nationally unique services beginning at 12 years of age, including transition planning, education, training and technical assistance, educational programs (College Bound, etc.), as well as “Career Focus,” a biannual teen newsletter.