For patients and parents

Manual for parents and patients Renal Pediatric Transplant Unit

SP

Link

Technique for urine culture in children

SP

Link

Manual for parents and patients Peritoneal Dialysis Unit

SP

Link

Information for patients and parents for care after pediatric renal transplant

SP

Link

Information on epidemiology of HUS monthly reports

SP

Link

Information about most frequent kidney diseases

SP

Link

Information for care after pediatric renal transplant

SP

Link

Video on renal diseases in infancy

SP

Link

SP

Link

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 […]

SP

Link

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

EN

Link

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

EN

Link

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

EN

Link

Bangla

Link

Detection of renal anomalies by antenatal ultrasound.

Bangla

Link

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

Bangla

Link

Fact sheet on the various causes of acute glomerulonephrirtis.

Bangla

Link

Fact sheet on AKI and its management.

Bangla

Link

Causes of hypertension in infants and children.

Bangla

Link

Fact sheet on how contrast media can cause AKI.

Bangla

Link

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

Bangla

Link

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

Bangla

Link

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

Bangla

Link

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

PO

Link

Facebook page for cystinosis patients and their families.

Link

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

PO

Link

Organ donation orientation and laws. Brazilian transplant registry news.

EN, PO

Link

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

PO

Link

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.

PO

Link

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

EN

Link

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

EN

Link

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

EN

Link

Family resources for many pediatric renal disorders.

EN

Link

Family resources for many pediatric renal disorders.

FR

Link

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.

EN

Link

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

EN

Link

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

EN

Link

General information on kidney diseases (adults)

SP

Link

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

CH, EN

Link

Official website of HKPNS with patient education materials.

CH, EN

Link

Official website of HKKF with patient education materials and support programs

CH, EN

Link

Data provision on kidney diseases.

CH, EN

Link

Official website of HKKF with patient education materials and support programs

CH, EN

Link

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

CH

Link

A platform providing popular science articles written by medical professionals

CH

Link

Data provision on rare disease

CH

Link

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

CH

Link

Data provision on Genetic kidney disease in China.

CH

Link

Website offering information on renal diseases, dialysis and transplantation

DA

Link

The Egyptian Group for Orphan Renal Diseases

AR/EN

Link

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

AR

Link

Site offers clinical services, research activities and educational services.

EN

Link

Information on the progress of cystinosis management in Egypt

EN

Link

Research, Educational Material, Biopsy Requests.

DA

Link

Platform for primary hyperoxaluria.

EN

Link

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

Link

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

FR

Link

Comic book about the nephrotic syndrome.

FR

Link

Patients association, chronic kidney disease.

FR

Link

Guide for urinary incontinence.

FR

Link

Guide for nocturnal enuresis.

FR

Link

Illustrated guide for the nephrotic syndrome.

FR

Link

Comic book about renal transplantation.

FR

Link

Patients association, chronic kidney disease, forums.

FR

Link

Illustrated guide to multicystic dysplastic kidney.

FR

Link

Association of all German nephrologists.

GE

Link

ERKNET, the European Rare Kidney Disease Reference Network

EN, GE

Link

Brochure on children with cystic renal disorders

GE

Link

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

GE

Link

Brochure on cystinosis from ERKNET

GE

Link

Information on atypical HUS

GE

Link

Patient information on the nephrotic syndrome from ERKNET

GE

Link

Page on multicystic dysplastic kidneys

GE

Link

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

HU

Link

Home page of the Hungarian National Kidney Program

HU

Link

Home page of the Hungarian Transplant Foundation

HU

Link

Home page of the Hungarian Society of Nephrology

HU

Link

Page on HUS from the Experimental Zooprophylactic Institute of Venice.

IT

Link

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

IT

Link

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

IT

Link

Page on Dent’s Disease from Telethon Foundation

IT

Link

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

IT

Link

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.

IT

Link

Web page on Berger’s Disease (IgA Nephropathy)

IT

Link

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.

IT

Link

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

IT

Link

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

EN, IT

Link

Website contains guidelines, contact information, forthcoming events

EN

Link

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

AR

Link

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

SP

Link

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

FR

Link

Site offers educational services and info on conferences of interest.

EN

Link

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.

NO

Link

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

EN

Link

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

EN

Link

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

EN

Link

Quick guide for patients and parents Automatized Peritoneal Dialysis

SP

Link

Main nephrological diseases in children

SP

Link

Guides for family and patients Lowe disease

SP

Link

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

TU

Link

Educational activities and information about kidney diseases.

EN/TU

Link

Contains educational material on hypertension for patients.

EN/TU

Link

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

TU

Link

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

EN

Link

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

EN

Link

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

EN

Link

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

EN

Link

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

AR/EN

Link

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