Africa

Oxalafrica

EN

Platform for primary hyperoxaluria.

Argentina

Fundación Sociedad Argentina de Pediatría

SP

Information for pediatricians and for the community. In the community area preventive general health measures, orientaion for inhalers and facial mask use; growth curves and general information on enuresis and HUS.

Sociedad Argentina de Pediatría

SP

General health preventive measures

Hospital Italiano de Buenos Aires

SP

Different topics of interest in general medicine: smoke cessation, food allergies, pediatricobesity

Australia

Kidney Health Australia

EN

Information regarding ESKD

PKD Foundation of Australia

EN

Information on ADPKD and ARPKD

Brazil

Brazilian Society of Nephrology

PO

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.

Brazilian Society of Pediatrics

PO

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

Brazilian Society of Solid Organs Transplants

EN|PO

Organ donation orientation and laws. Brazilian transplant registry news.

ICRIM Institute for Support to the child/adolescent with renal disease

PO

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

Patient support group for cystinosis

Patient and family support list.

China

China-Dolis center for rare disorders

EN|CH

Lifespring

CH

Explains common renal diseases, contains FAQs and news regarding patient centred activities.

Denmark

Danish Kidney Association

DA

Egypt

Cairo University Center for Pediatric Nephrology and Transplantation

EN

Research, Educational Material, Biopsy Requests.

Cystinosis Support Group

EN

Support for Egyptian families with cystinosis.

neveenase [at] yahoo.com
neveen.soliman [at] hotmail.com

Egyptian Society of Nephrology

EN

Website of the Egyptian Society of Nephrology.

Mansoura University website

AR

Website of Mansoura Urology and Nephrology Center, Egypt.

EGORD

EN

Rare renal diseases.

Egyptian Society of Nephrology and Transplantation Virtual Academy

EN|AR

Prevention of renal disease, peritoneal dialysis, renal stones, fitness and renal disease.

Hope Team: Alexandria University

EN

Group aiming at the social and financial support of poor pediatric patients with renal disease.
alaa_thabet [at] hotmail.com

Europe

Working Group on Psychological aspects of CKD

EN

European Hyperoxaluria Consortium

EN

FEDERG

EN

Inherited renal diseases.

France

AIRG

EN|FR

Patients association, genetic renal diseases.

FNAIR

FR

Patients association, chronic kidney disease.

RENALOO

FR

Patients association, chronic kidney disease, forums.

AMSN

FR

Patients association, nephrotic syndrome.
Syndrome.nephrotique [at] laposte.net

Fondation du rein

FR

Patients association, chronic kidney disease.

Transforme

FR

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

Germany

German Pediatric Nephrology Association (GPN)

EN|GE|TU

Association of German Ped. Nephrologists.

German Society of Nephrology (DGfN)

GE

Association of all German nephrologists.

Alliance of Chronic Rare Diseases (ACHSE)

GE

Parental infomation on rare kidney diseases.

Working Group Pediatric Urology (AK-KU)

GE

Association of ped. urologists and nephrologists.

PKD Cure Germany

GE

Parental information on cystic kidney disease.

German Alport Patient Foundation

GE

Patient association; Parental information on alport syndrome.

Hungary

Hungary Society for Nephrology

HU

Transplant Foundation

HU

National Kidney Program

HU

India

Indian Society of Pediatric Nephrology

EN

Parental information on UTI and NS and Indian consensus guidelines and registries.

Cystinosis Chapter of India

EN

Advice about drug procurement.

Kidney Foundation for children

EN

Basic parental information about kidney disease and pediatric nephrology services in western india.

Save your Kidney

EN|AR

Basic information about the kidneys and renal disease in several languages (adult oriented).

Atypical HUS

EN

Registry and HUS disease information.

Italy

UNIAMO- Federazione Italiana Malattie Rare

EN|IT

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

Società Italiana di Nefrologia

IT

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

AIDO (ASSOCIAZIONE ITALIANA DONATORI DI ORGANO)

IT

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.

FIR (FONDAZIONE ITALIANA DEL RENE)

IT

The FIR non-profit organization brings together all patients with renal disease and all those - people, associations and organizations - who are engaged in dealing with kidney disease to treat them, to limit damage or to prevent them.

ANED (Associazione Nazionale Emodializzati)

IT

The Association "... is made between citizens undergoing dialysis, organ transplantation, conservative treatment for chronic kidney disease, their families and all those who are interested in achieving the aims of the Association.  that are: prevention of kidney disease, a dialysis place for all people and more 'close to home as possible, the promotion of the kidney transplantation policy.

VACTREL association

IT

Nephrotic Syndrome

IT

Rare diseases

IT

Ministry of Health

IT

Societa Italiana di Pediatria

IT

Continuing Education for Pediatricians. Parental Information, Link to Associations, Link to Pediatric Specialties Societies.

Associazone Sindrome Nefrosica Italia

IT

Parental information about Nephrotic Syndrome and pediatric nephrology services with specific expertise. Social assistance on law benefits. National Meeting with Pediatric Nephrologists and patients.

Poycystic kidney disease

IT

Prevention, Information and Education, Support of Research.

Alports Syndrome

IT

Scientific and legal support to people with Alport Syndrome and other rare genetic diseases and their families.
Search for and disclose all information regarding such diseases through the creation of a database.
Raise funds in order to promote social, political and scientific all activities aimed at diagnosis and scientific research.
Promote collaboration with other national and international associations with similar objectives.

Hemodialysis

IT

Cystinosis association

IT

Facilitate the meeting of patients and their families to exchange ideas and experiences; Promote the study and research on cystinosis.

Jordan

Friends of Kidney Disease patients

AR

Comprehensive Guide to Civil Society Organizations in Jordan.

Enuresis

EN|AR|FR

Site for nocturnal enuresis patient and family support and information on causes and management.

Korea, Republic of

Korean Society of Pediatric Nephrology

KO

Kuwait

Kuwait Medical Association

AR

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

Guidelines for the Management of Common Pedaitric Diseases

EN

Few pediatric nephrology topics for physicians.

Mexico

Mexican Kidney Foundation

SP

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

Morocco

Moroccan association for combating kidney diseases

FR

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

Nigeria

African Pediatric Nephrology Association

EN

Norway

Liver and Kidney Transplant Society

NO

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.

Singapore

Children’s Kidney Center, KTP-National University Children’s Medical Institute

EN

South Africa

Renal Care Society of South Africa

EN

South African Renal Society

EN

National Kidney Foundation of SA

EN

Turkey

Turkish Pediatric Nephrology Association

TU

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

Turkish Hypertension association

EN|TU

Contains educational material on hypertension for patients.

Kidney Foundation

EN|TU

Educational activities and information about kidney diseases.

Turkish Cystinosis Association

TU

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

United Kingdom

infoKID (BAPN + RCPCH + BKPA)

EN

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

Transition to Adult Care : Ready Steady Go Program

EN

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

Rare renal disease

EN

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

United States

Oxalosis and Hyperoxaluria Foundation

EN

Description of the disease, symptoms, treatments; information on clinical trials, patient registries; advocacy, fundraising.

Prune Belly Syndrome Network

EN

Education about the disease, patient support networks, meetings (including annual conventions).

PKD Foundation

EN

Education about disease (patient and parent), treatment (including dialysis and transplantation), research trials, events, patient support.

PCRRT Foundation

EN

Pediatric critical care nephrology.

International Children Continence Society

EN

Information regarding bedwetting and incontinence.

Hospital For Sick Children, Canada -About Kids health

EN

Topics: Bed-Wetting, Taking Your Child’s Blood Pressure, Clean Intermittent Catheterization for Boys and Girls, Cystoscopy, Urinary Catheter Care at Home, Voiding Cystourethrogram (VCUG).

Health Information Translations (Ohio State University)

EN|AR

Topics: Diabetes and Kidney Problems, Dialysis, Hypertension, Kidney Failure, UTI (Urinary Tract Infection).

US National Library of Medicine

AR|EN

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

Alport Syndrome Foundation

EN

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

American Society of Pediatric Nephrology

EN

Links to other sites for families (NIH, Cystinosis F, Am Assoc of Kid patients,), link matching volunteers and specific research sites.

National Kidney Foundation

EN

Offers peer suport, "Ask the Doctor," nutrition advice, CKD/dialysis info, links to other sites.

NephCure Foundation

EN

Information about glomerular disease, CKD; advise about nutrition, treatment; peer support.

Cystinosis Foundation

EN

Patient education about cystinosis, "Ask a question," referral information, newsletter, links to other sites.

Cystinosis Research Network

EN

Education, information about how to obtain treatments, support group information, scholarship information, physician recommendations.

The Cystinosis Research Foundation (CRF)

EN

Foundation for cystinosis research.