Manual for parents and patients Renal Pediatric Transplant Unit

Technique for urine culture in children

Manual for parents and patients Peritoneal Dialysis Unit

Information for patients and parents for care after pediatric renal transplant

Information on epidemiology of HUS monthly reports

Information about most frequent kidney diseases

Information for care after pediatric renal transplant

Video on renal diseases in infancy

Video prevention HUS

Information for the community regarding common nephrological diseases Topic Link Nephrotic Syndrome Sindrome nefrotico UTI Sindrome de mala eliminacion UTI Infeccion urinaria Hydronephrosis Dilatación de la vía urinaria en el feto HUS Prevención de SUH CKD Ninos con resgo de presentar enfermedad renal crónica Hematuria Hematuria Normal Kidney Cuidado de los rinones Miscellaneous Poliuria Miscellaneous […]

Website offers fact sheets on UTI, urinary catheters and urine samples.

Website offers information sheets on a wide range of renal and urological conditions in children.

Website offers a wide range of information on the functions of the kidneys, detection of renal disease and support for kidney patients.

Fact sheet on phimosis.

Detection of renal anomalies by antenatal ultrasound.

Fact sheet on the relationship between low birth weight and  preterm deliveries and CKD.

Fact sheet on the various causes of acute glomerulonephrirtis.

Fact sheet on AKI and its management.

Causes of hypertension in infants and children.

Fact sheet on how contrast media can cause AKI.

Fact sheet on the presentation, complications and management of PUVs.

Fact sheet on the causes and management of CKD in infants and children.

Fact sheet on the presentation and management of the nephrotic syndrome in children.

Fact sheet on cystinosis including the causes, symptoms and treatment of the disease.

Facebook page for cystinosis patients and their families.

Brief information on pediatric renal diseases. The NGO’s main objective is to give some financial and psychological support to families with CKD kids.

Organ donation orientation and laws. Brazilian transplant registry news.

The site provides the community with booklets on normal growth and development according to age groups, nutrition and frequently asked questions.

The site has a page dedicated to the community with different topics: general health, renal health, patients rights and basic texts on CKD, hypertension, diabetes and so on.

Books and videos on living with reduced kidney function from the Canadian Kidney Knowledge Translation and Generation Network.

Infographic on planning for dialysis from the Canadian Kidney Knowledge Translation and Generation Network.

Educational tools including modules, booklets, activity sheets, and glossary from the Canadian Kidney Knowledge Translation and Generation Network.

Family resources for many pediatric renal disorders.

Family resources for many pediatric renal disorders.

General pediatrics topics and many pediatric nephrology topics including Bed-Wetting, Taking Your Child’s Blood Pressure, Clean Intermittent Catheterization for Boys and Girls, Cystoscopy, Urinary Catheter Care at Home, Voiding Cystourethrogram (VCUG)…..etc.

A not-for-profit organization with the mission of supporting patients and families living with atypical Hemolytic Uremic Syndrome.

A booklet from Montreal Children’s Hospital for families with children with hydronephrosis in pdf format.

General information on kidney diseases (adults)

Official website of CKF, non- governmental organization providing funding support and various programs to paediatric nephrology patients.

Official website of HKPNS with patient education materials.

Official website of HKKF with patient education materials and support programs

Data provision on kidney diseases.

Official website of HKKF with patient education materials and support programs

A platform providing Q & A for the  community on medical diseases

A platform providing popular science articles written by medical professionals

Data provision on rare disease

Data provision on the recent   advance of medical Science in China.

Data provision on Genetic kidney disease in China.

Website offering information on renal diseases, dialysis and transplantation

The Egyptian Group for Orphan Renal Diseases

Site offers info on the university’s clinical services, research activities and educational services.

Site offers clinical services, research activities and educational services.

Information on the progress of cystinosis management in Egypt

Research, Educational Material, Biopsy Requests.

Platform for primary hyperoxaluria.

Guide for rare renal diseases from the website Orphan Kidney Diseases.

Patients association, aiming at enhancing physical activity after transplantation, Part of the International Sport Games for Transplanted Patients.

Comic book about the nephrotic syndrome.

Patients association, chronic kidney disease.

Guide for urinary incontinence.

Guide for nocturnal enuresis.

Illustrated guide for the nephrotic syndrome.

Comic book about renal transplantation.

Patients association, chronic kidney disease, forums.

Illustrated guide to multicystic dysplastic kidney.

Association of all German nephrologists.

ERKNET, the European Rare Kidney Disease Reference Network

Brochure on children with cystic renal disorders

A discussion of vesico-ureteral reflux. Additional pediatric nephrology topics accessible from links on the page.

Brochure on cystinosis from ERKNET

Information on atypical HUS

Patient information on the nephrotic syndrome from ERKNET

Page on multicystic dysplastic kidneys

Page from the Hungarian National Kidney Program on the nephrotic syndrome.

Home page of the Hungarian National Kidney Program

Home page of the Hungarian Transplant Foundation

Home page of the Hungarian Society of Nephrology

Page on HUS from the Experimental Zooprophylactic Institute of Venice.

Page on HUS from the Italian Portal of Epidemiology For Public Health.

Information on the nephrotic syndrome from the Italian Parent’s Guide.

Page on Dent’s Disease from Telethon Foundation

Association for citizens undergoing dialysis, organ transplantation, conservative treatment for chronic kidney disease, and their families.

Non-profit organization aiming at the prevention and early detection of renal disease, diffusion of transplantation, and promoting the dialogue between patients, healthcare professionals and industry associations.

Web page on Berger’s Disease (IgA Nephropathy)

It promotes and participates in training, information and awareness and support for scientific research in the field of collecting and transplantation of organs, tissues and cells.

Educational activities medical staff, doctors and nurses, patients and their families, Prevention campaigns and health education.

Parental information about rare kidney diseases and pediatric nephrology services with specific expertise. Social assistance on law benefits.

Website contains guidelines, contact information, forthcoming events

Contains information on CKD, hypertension, Renal stones, UTI, PKD, SLS, Dialysis and Transplantation.

Information for patients and families onsupport programs for CKD and RRT patients.

Information on Kidney diseases and their early detection as the first steps in the prevention.

Site offers educational services and info on conferences of interest.

This is a patient organization which offers meetings, activities for young patients, family camps. They also produce a lot of information brochures regarding different aspects in chronic kidney disease as well as after tx. They also support research projects.

Site offers info on kidney disease, news and events from SA, research grants and links to other websites.

Site offers info on the kidney, renal failure and diet in renal diseases.

Site offers info on events, nephrology training, practice guidelines and SA renal registry.

Quick guide for patients and parents Automatized Peritoneal Dialysis

Main nephrological diseases in children

Guides for family and patients Lowe disease

This is the website of cystinosis established by Turkish cystinosis family association.

Educational activities and information about kidney diseases.

Contains educational material on hypertension for patients.

Patients section contains information on UTI, VUR, Enuresis, CKD, AKI, CAKUT.

Nationally accredited (Information Standard) Information on Rare renal diseases.

Web and paper-based programme comprosing information and questionaires on transition for families of children with long term conditions.

Web and paper-based Nationally accredited (Information Standard) Information on conditions, treatments, practical information all linked via user-friendly web platform.

General information, diagnosis, treatment, videos from experts; patient registry,clinical trials; patient support/connections; physiician recommendations.

Topics: Care of a Foley Catheter, Dialysis, Hypertension, Kidney Failure, UTI.