Orphan Europe + Cystinosis Foundation
Platform for primary hyperoxaluria.
African Pediatric Nephrology Association
Fundación Sociedad Argentina de Pediatría
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
General health preventive measures. The website offers various materials about kidney disease in Spanish language. Please see the links below.
|Nephrotic Syndrome||Sindrome nefrotico|
|UTI||Sindrome de mala eliminacion|
|Hydronephrosis||Dilatación de la vía urinaria en el feto|
|HUS||Prevención de SUH|
|CKD||Ninos con resgo de presentar enfermedad renal crónica|
|Normal Kidney||Cuidado de los rinones|
|Miscellaneous||Pacientes con rinon único sano|
Hospital Italiano de Buenos Aires
Different topics of interest in general medicine: smoke cessation, food allergies, pediatricobesity
Kidney Health Australia
Information regarding ESKD
PKD Foundation of Australia
Information on ADPKD and ARPKD
Monash Childrens Hospital
The Royal Children’s Hospital Melbourne
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.
Patient support group for cystinosis
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.
Brazilian Society of Solid Organs Transplants
Organ donation orientation and laws. Brazilian transplant registry news.
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.
Patient support group for cystinosis
Patient and family support list.
Muitos Somos Raros
McMaster Childrens Hospital
Montreal Childrens Hospital
Hospital For Sick Children, Canada -About Kids health
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).
La maladie rénale chronique
Canadian Association of Paediatric Nephrology
Kidney Health Resources for Chronic Kidney Disease (Kidney Twins)
Choosing a dialysis therapy
Living with Kidney Disease:
Explains common renal diseases, contains FAQs and news regarding patient centred activities.
龙华古寺生命源泉透析基地 - 儿童肾病关爱网
China-Dolis center for rare disorders
Danish Kidney Association
Cairo University Center for Pediatric Nephrology and Transplantation
Research, Educational Material, Biopsy Requests.
Cystinosis Support Group
Support for Egyptian families with cystinosis.
neveenase [at] yahoo.com
neveen.soliman [at] hotmail.com
Egyptian Society of Nephrology
Website of the Egyptian Society of Nephrology.
Mansoura University website
Website of Mansoura Urology and Nephrology Center, Egypt.
Rare renal diseases.
Egyptian Society of Nephrology and Transplantation Virtual Academy
Prevention of renal disease, peritoneal dialysis, renal stones, fitness and renal disease.
Hope Team: Alexandria University
Group aiming at the social and financial support of poor pediatric patients with renal disease.
alaa_thabet [at] hotmail.com
Working Group on Psychological aspects of CKD
European Hyperoxaluria Consortium
Inherited renal diseases.
ERKNET- European Reference Network for Rare Kidney Diseases
Overcoming lysosomal diseases
Association Inter- régionale de Recherche en CHirurgie Pédiatrique
Ministry of Health
Patients association, genetic renal diseases.
Patients association, chronic kidney disease, forums.
Le retour des Reins Trognons
Dysplasie rénale multikystique
Patients association, nephrotic syndrome.
Syndrome.nephrotique [at] laposte.net
Le syndrome nephrotique
Fondation du rein
Patients association, chronic kidney disease.
Les reins gonflés
Patients association, aiming at enhancing physical activity after transplantation, Part of the International Sport Games for Transplanted Patients.
Alliance of Chronic Rare Diseases (ACHSE)
Parental infomation on rare kidney diseases.
Working Group Pediatric Urology (AK-KU)
Association of ped. urologists and nephrologists.
PKD Cure Germany
Parental information on cystic kidney disease.
aHUS Patient Forum
German Alport Patient Foundation
Patient association; Parental information on alport syndrome.
PH slfhelp eV
Self Help Group
Soziale Pädiatrie und Jugendmedizin
Cystic kidney disease in children
German Pediatric Nephrology Association (GPN)
Association of German Ped. Nephrologists.
German Society of Nephrology (DGfN)
Association of all German nephrologists.
Hungary Society for Nephrology
National Kidney Program
Nemzeti Vesi Program
Indian Society of Pediatric Nephrology
Parental information on UTI and NS and Indian consensus guidelines and registries.
Cystinosis Chapter of India
Advice about drug procurement.
Kidney Foundation for children
Basic parental information about kidney disease and pediatric nephrology services in western india.
Save your Kidney
Basic information about the kidneys and renal disease in several languages (adult oriented).
Registry and HUS disease information.
Ministry of Health
Societa Italiana di Pediatria
Continuing Education for Pediatricians. Parental Information, Link to Associations, Link to Pediatric Specialties Societies.
Associazone Sindrome Nefrosica Italia
Parental information about Nephrotic Syndrome and pediatric nephrology services with specific expertise. Social assistance on law benefits. National Meeting with Pediatric Nephrologists and patients.
Bambino Gesu Ospedale Pediatrico
Poycystic kidney disease
Prevention, Information and Education, Support of Research.
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.
Facilitate the meeting of patients and their families to exchange ideas and experiences; Promote the study and research on cystinosis.
UNIAMO- Federazione Italiana Malattie Rare
Parental information about rare kidney diseases and pediatric nephrology services with specific expertise. Social assistance on law benefits.
Società Italiana di Nefrologia
Educational activities medical staff, doctors and nurses, patients and their families, Prevention campaigns and health education.
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.
Comitato I Milani
FIR (FONDAZIONE ITALIANA DEL RENE)
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)
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.
The portal of epidemiology for public health
Experimental Zooprophylactic Institute of the Venezie
Friends of Kidney Disease patients
Comprehensive Guide to Civil Society Organizations in Jordan.
Korea, Republic of
Korean Society of Pediatric Nephrology
Kuwait Medical Association
Contains information on CKD, hypertension, Renal stones, UTI, PKD, SLS, Dialysis and Transplantation.
Mexican Kidney Foundation
Information for patients and families onsupport programs for CKD and RRT patients.
Moroccan association for combating kidney diseases
Information on Kidney diseases and their early detection as the first steps in the prevention.
Meander Medisch Centrum
Center for tubular disorders (KidTube)
Kind en Groei
Cystinose Group Nederlands
Expertise in kaart
Kidshealth, The Paediatric Society Of New Zealand
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.
Guide for patients and families
hiperoksaluria Informacja o pacjencie
Life health doctor
Portal da dialise
Children’s Kidney Center, KTP-National University Children’s Medical Institute
Renal Care Society of South Africa
South African Renal Society
National Kidney Foundation of SA
Lowe Syndrome Project
Patient Support Group
National Board of Health and Welfare
Syrian Arab Republic
Turkish Pediatric Nephrology Association
Patients section contains information on UTI, VUR, Enuresis, CKD, AKI, CAKUT.
Turkish Hypertension association
Contains educational material on hypertension for patients.
Educational activities and information about kidney diseases.
Turkish Cystinosis Association
This is the website of cystinosis established by Turkish cystinosis family association.
Turkish Cystinosis Association
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.
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.
Rare renal disease
Nationally accredited (Information Standard) Information on Rare renal diseases.
Kidney Research UK
Lowe Syndrome Trust
University of California San Francisco
Genetics Home reference
Oxalosis and Hyperoxaluria Foundation
Health Encyclopedia (Univ of Rochester)
American Academy of Family Physicians
American Academy of Pediatrics
American Urological Association
Pediatric Oncall Child Health Care
American College Of Rheumatology
Children’s National Health System
American Society of Transplantation
American Society of Pediatric Nephrology
Links to other sites for families (NIH, Cystinosis F, Am Assoc of Kid patients,), link matching volunteers and specific research sites.
National Kidney Foundation
Offers peer suport, "Ask the Doctor," nutrition advice, CKD/dialysis info, links to other sites.
Information about glomerular disease, CKD; advise about nutrition, treatment; peer support.
Patient education about cystinosis, "Ask a question," referral information, newsletter, links to other sites.
International Childrens Continence Society
Cystinosis Research Network
Education, information about how to obtain treatments, support group information, scholarship information, physician recommendations.
The Cystinosis Research Foundation (CRF)
Foundation for cystinosis research.
Mostellar Medical Centre
Boston Children´s Hospital
Oxalosis and Hyperoxaluria Foundation
Description of the disease, symptoms, treatments; information on clinical trials, patient registries; advocacy, fundraising.
Prune Belly Syndrome Network
Education about the disease, patient support networks, meetings (including annual conventions).
Centers For Disease Control And Prevention
Pediatric critical care nephrology.
International Children Continence Society
Information regarding bedwetting and incontinence.
National Resource Center on Lupus USA
Nationwide Children’s Hospital
Kidshealth, The Nemours Foundation
Health Information Translations (Ohio State University)
Topics: Diabetes and Kidney Problems, Dialysis, Hypertension, Kidney Failure, UTI (Urinary Tract Infection).
US National Library of Medicine
Topics: Care of a Foley Catheter, Dialysis, Hypertension, Kidney Failure, UTI.
The Bartter Site
Alport Syndrome Foundation
General information, diagnosis, treatment, videos from experts; patient registry,clinical trials; patient support/connections; physiician recommendations.