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Argentina

Hospital Universitario Austral

Manual for parents and patients Renal Pediatric Transplant Unit

SP
Link

Hospital Universitario Austral

Technique for urine culture in children

SP
Link

Hospital Universitario Austral

Manual for parents and patients Peritoneal Dialysis Unit

SP
Link

Hospital Universitario Austral

Information for patients and parents for care after pediatric renal transplant

SP
Link

Heath department of Argentina

Information on epidemiology of HUS monthly reports

SP
Link

Hospital Garrahan from Buenos Aires

Information about most frequent kidney diseases

SP
Link

Hospital Universitario Austral from Buenos Aires Argentina

Information for care after pediatric renal transplant

SP
Link

Hospital Universitario Austral from Buenos Aires Argentina

Video on renal diseases in infancy

SP
Link

Hospital Universitario Austral from Buenos Aires Argentina

Video prevention HUS

SP
Link

Sociedad Argentina de Pediatría

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

Australia

The Royal Children’s Hospital Melbourne

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

EN
Link

Monash Childrens Hospital

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

EN
Link

Kidney Health Australia

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

EN
Link

Bangladesh

Phimosis

Fact sheet on phimosis.

Bangla
Link

Role of Antenatal Ultrasound in kidney disease

Detection of renal anomalies by antenatal ultrasound.

Bangla
Link

Chronic kidney disease in preterm and low birth weight infants

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

Bangla
Link

Glomerulonephritis-RPGN

Fact sheet on the various causes of acute glomerulonephrirtis.

Bangla
Link

Acute Kidney Injury

Fact sheet on AKI and its management.

Bangla
Link

Hypertension

Causes of hypertension in infants and children.

Bangla
Link

Contrast Induced Nephropathy

Fact sheet on how contrast media can cause AKI.

Bangla
Link

Posterior urethral valve

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

Bangla
Link

Chronic Kidney Disease

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

Bangla
Link

Nephrotic Syndrome

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

Bangla
Link

Brazil

Cystinosis

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

PO
Link

Patient Support Group For Cystinosis

Facebook page for cystinosis patients and their families.

Link

Icrim Institute for Support to the Child/Adolescent with Renal Disease

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

Brazilian Society of Solid Organs Transplants

Organ donation orientation and laws. Brazilian transplant registry news.

EN, PO
Link

Brazilian Society of Pediatrics

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

PO
Link

Brazilian Society of Nephrology

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

Canada

Living With Reduced Kidney Functions

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

EN
Link

Planning for Dialysis

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

EN
Link

Healthy Kidneys

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

EN
Link

Canadian Association of Paediatric Nephrology

Family resources for many pediatric renal disorders.

EN
Link

Canadian Kidney Foundation

Family resources for many pediatric renal disorders.

FR
Link

About Kids Health, Canada

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

Hemolytic Uremic Syndrome

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

EN
Link

Hydronephrosis

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

EN
Link

Chile

Fundacion de Educacion renal Sociedad Chilena de Nefrologia

General information on kidney diseases (adults)

SP
Link

China

Children’s Kidney Fund (CKF)

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

CH, EN
Link

The Hong Kong Paediatric Nephrology Society (HKPNS )

Official website of HKPNS with patient education materials.

CH, EN
Link

The Hong Kong Nephrology Society (HKSN)

Official website of HKKF with patient education materials and support programs

CH, EN
Link

Smart Patient – Hospital Authority’s website ( on kidney diseases )

Data provision on kidney diseases.

CH, EN
Link

The Hong Kong Kidney Foundation (HKKF)

Official website of HKKF with patient education materials and support programs

CH, EN
Link

知乎

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

CH
Link

丁香医生

A platform providing popular science articles written by medical professionals

CH
Link

瓷娃娃罕见病关爱中心 CHINA-DOLLS CENTER FOR RARE DISORDERS

Data provision on rare disease

CH
Link

中国科普网 China Science Communication

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

CH
Link

中国儿童遗传性肾脏疾病数据库 Chinese Children Genetic Kidney Disease Database

Data provision on Genetic kidney disease in China.

CH
Link

Denmark

DANISH KIDNEY ASSOCIATION

Website offering information on renal diseases, dialysis and transplantation

DA
Link

Egypt

EGORD

The Egyptian Group for Orphan Renal Diseases

AR/EN
Link

MANSOURA UNIVERSITY WEBSITE

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

AR
Link

EGYPTIAN SOCIETY OF NEPHROLOGY

Site offers clinical services, research activities and educational services.

EN
Link

CYSTINOSIS

Information on the progress of cystinosis management in Egypt

EN
Link

CAIRO UNIVERSITY CENTER FOR PEDIATRIC NEPHROLOGY AND TRANSPLANTATION

Research, Educational Material, Biopsy Requests.

DA
Link

OxalAfrica

Platform for primary hyperoxaluria.

EN
Link

France

Rare Kidney Diseases

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

Link

TRANSFORME

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

FR
Link

LES REINS GONFLÉS

Comic book about the nephrotic syndrome.

FR
Link

FONDATION DU REIN

Patients association, chronic kidney disease.

FR
Link

TOUSALECOLE

Guide for urinary incontinence.

FR
Link

ENURÉSIE

Guide for nocturnal enuresis.

FR
Link

LE SYNDROME NEPHROTIQUE

Illustrated guide for the nephrotic syndrome.

FR
Link

LE RETOUR DES REINS TROGNONS

Comic book about renal transplantation.

FR
Link

RENALOO

Patients association, chronic kidney disease, forums.

FR
Link

DYSPLASIE RÉNALE MULTIKYSTIQUE

Illustrated guide to multicystic dysplastic kidney.

FR
Link

Germany

GERMAN SOCIETY OF NEPHROLOGY (DGFN)

Association of all German nephrologists.

GE
Link

ERKNET

ERKNET, the European Rare Kidney Disease Reference Network

EN, GE
Link

CYSTIC KIDNEY DISEASE IN CHILDREN

Brochure on children with cystic renal disorders

GE
Link

KIDSDOC

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

GE
Link

SOZIALE PÄDIATRIE UND JUGENDMEDIZIN

Brochure on cystinosis from ERKNET

GE
Link

SELF HELP GROUP FOR ATYPICAL HUS

Information on atypical HUS

GE
Link

NEPHROTIC SYNDROME

Patient information on the nephrotic syndrome from ERKNET

GE
Link

MEDLEXI.DE

Page on multicystic dysplastic kidneys

GE
Link

PH SLFHELP EVGE

GE
Link

HYDRONEPHROSE

GE
Link

Hungary

Nephrotic Syndrome

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

HU
Link

NATIONAL KIDNEY PROGRAM

Home page of the Hungarian National Kidney Program

HU
Link

TRANSPLANT FOUNDATION

Home page of the Hungarian Transplant Foundation

HU
Link

HUNGARY SOCIETY FOR NEPHROLOGY

Home page of the Hungarian Society of Nephrology

HU
Link

India

UTI prevention

Tamil
Link

Nephrotic Syndrome Diet

Tamil
Link

Bedwetting

Tamil
Link

Bedwetting

Gurajati
Link

Nephrotic Syndrome

Gurajati
Link

Urine Culture

Gurajati
Link

CIC

hindi
Link

Nephrotic Syndrome

Malayalam
Link

Immunocompromised child

Malayalam
Link

SLE

Malayalam
Link

Italy

HEMOLYTIC UREMIC SYNDROME

Page on HUS from the Experimental Zooprophylactic Institute of Venice.

IT
Link

HEMOLYTIC UREMIC SYNDROME

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

IT
Link

NEPHROTIC SYNDROME

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

IT
Link

DENT’S DISEASE

Page on Dent’s Disease from Telethon Foundation

IT
Link

National Hemodialysis Association

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

IT
Link

Italian Kidney Foundation

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

IgA Nephropathy

Web page on Berger’s Disease (IgA Nephropathy)

IT
Link

AIDO (ASSOCIAZIONE ITALIANA DONATORI DI ORGANO)

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

SOCIETÀ ITALIANA DI NEFROLOGIA

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

IT
Link

UNIAMO- FEDERAZIONE ITALIANA MALATTIE RARE

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

EN, IT
Link

Kenya

Kenya Renal Association

Website contains guidelines, contact information, forthcoming events

EN
Link

Kuwait

KUWAIT MEDICAL ASSOCIATION

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

AR
Link

Lithuania

INFORMED

Link

WOMENSECR

Link

ALFA-WOMEN.COM

Link

MEDHELPSIS

Link

Mexico

MEXICAN KIDNEY FOUNDATION

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

SP
Link

Morocco

MOROCCAN ASSOCIATION FOR COMBATING KIDNEY DISEASES

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

FR
Link

Netherlands

EXPERTISE IN KAART

Link

ERFELIJKHEID.NL

Link

NIERSTICHTING

Link

NIEREN.NL

Link

CYSTINOSE GROUP NEDERLANDS

Link

KIND EN GROEI

Link

CUREIHUS

Link

KIDNEYTUBE

Link

CENTER FOR TUBULAR DISORDERS (KIDTUBE)

Link

KIDNEY FOUNDATION

Link

New Zealand

KIDSHEALTH, THE PAEDIATRIC SOCIETY OF NEW ZEALAND

EN
Link

Nigeria

Nigerian Association of Nephrology

Site offers educational services and info on conferences of interest.

EN
Link

African Pediatric Nephrology Association

EN
Link

Norway

LIVER AND KIDNEY TRANSPLANT SOCIETY

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

Poland

LIFE HEALTH DOCTOR

Link

STOLICA ZDROWIA

Link

MEDME

Link

PO.DURANDHEDT.DU

Link

ZESPOL AIPORTA

Link

ZDROWY PORTAL

Link

HIPEROKSALURIA INFORMACJA O PACJENCIE

Link

MEDIA PLANET

Link

WYLECZ TO

Link

GUIDE FOR PATIENTS AND FAMILIES

Link

Portugal

NORTAO

Link

TUA SAUDE

PO
Link

PRO RENAL

PO
Link

INFOESCOLA

PO
Link

PORTAL DA DIALISE

PO
Link

ABCMED

PO
Link

Republic of

KOREAN SOCIETY OF PEDIATRIC NEPHROLOGY

KO
Link

Singapore

CHILDREN’S KIDNEY CENTER, KTP-NATIONAL UNIVERSITY CHILDREN’S MEDICAL INSTITUTE

EN
Link

South Africa

South African National Kidney Foundation

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

EN
Link

Kwa-Zulu Natal Kidney Association

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

EN
Link

NATIONAL KIDNEY FOUNDATION OF SA

EN
Link

SOUTH AFRICAN RENAL SOCIETY

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

EN
Link

RENAL CARE SOCIETY OF SOUTH AFRICA

EN
Link

Spain

Hospital Universitario Austral

Quick guide for patients and parents Automatized Peritoneal Dialysis

SP
Link

Asociacion española de Pediatria (Spanish association of Pediatrics)

Main nephrological diseases in children

SP
Link

Hospital San Joan de Déu Barcelona

Guides for family and patients Lowe disease

SP
Link

SYNDROMES

SP
Link

PATIENT SUPPORT GROUP

SP
Link

AEP

SP
Link

LOWE SYNDROME PROJECT

SP
Link

Sweden

CYSTNJURAR

Link

KAROLINSKA INSTITUT

Link

MEDICINE

Link

Syrian Arab Republic

CHILD CLINIC

Link

WEB TEB

AR
Link

Turkey

TURKISH CYSTINOSIS ASSOCIATION

Link

TURKISH CYSTINOSIS ASSOCIATION

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

TU
Link

KIDNEY FOUNDATION

Educational activities and information about kidney diseases.

EN/TU
Link

TURKISH HYPERTENSION ASSOCIATION

Contains educational material on hypertension for patients.

EN/TU
Link

TURKISH PEDIATRIC NEPHROLOGY ASSOCIATION

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

TU
Link

United Kingdom

LOWE SYNDROME TRUST

EN
Link

NHS CHOICES

EN
Link

KIDNEY RESEARCH UK

EN
Link

PKD CHARITY

EN
Link

RARE RENAL DISEASE

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

EN
Link

TRANSITION TO ADULT CARE : READY STEADY GO PROGRAM

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

EN
Link

INFOKID (BAPN + RCPCH + BKPA)

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

EN
Link

PATIENT INFO

EN
Link

EUROPEAN HYPEROXALURIA CONSORTIUM

EN
Link

United States

UNC KIDNEY CENTER

EN
Link

FAIRVIEW

EN
Link

LOWE SYNDROME ASSOCIATION

EN
Link

UNC SCHOOL OF MEDICINE

CH/EN/SP
Link

NORD

EN
Link

NFK

EN
Link

NIDDK (NIH)

EN
Link

ALPORT SYNDROME FOUNDATION

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

EN
Link

THE BARTTER SITE

EN
Link

US NATIONAL LIBRARY OF MEDICINE

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

AR/EN
Link