Orphan Europe + Cystinosis Foundation

SP

aHUS Alliance

EN|FR|SP

PKD International

EN

I liveOK

SP

Msd Manual

Orphan Europe

EN

Africa

Oxalafrica

EN

Platform for primary hyperoxaluria.

African Pediatric Nephrology Association

EN

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. The website offers various materials about kidney disease in Spanish language. Please see the links below.

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 Quistes renales
Miscellaneous Pacientes con rinon único sano

 

 

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

Monash Childrens Hospital

EN

The Royal Children’s Hospital Melbourne

EN

Brazil

Patient support group for cystinosis

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.

Muitos Somos Raros

PO

Canada

McMaster Childrens Hospital

EN

Montreal Childrens Hospital

FR

SHUa Canada

EN

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).

La maladie rénale chronique              

FR

Canadian Association of Paediatric Nephrology

EN

Kidney Health Resources for Chronic Kidney Disease (Kidney Twins)

EN

Choosing a dialysis therapy

EN

Living with Kidney Disease:

EN

China

丁香医生

CH

健康第一线, 视频

CH

医院的科普书~~解读肾移植

CH

Lifespring

CH

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

搜狐视频

CH

百度百科

CH

百科名医

CH

知乎

CH

龙华古寺生命源泉透析基地 - 儿童肾病关爱网

CH

China-Dolis center for rare disorders

EN|CH

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.

ERKNET- European Reference Network for Rare Kidney Diseases

France

Overcoming lysosomal diseases

FR

Association Inter- régionale de Recherche en CHirurgie Pédiatrique

FR

Ministry of Health

FR

Single Kidney

FR

AIRG

EN|FR

Patients association, genetic renal diseases.

RENALOO

FR

Patients association, chronic kidney disease, forums.

Le retour des Reins Trognons              

FR

Dysplasie rénale multikystique

FR

AMSN

FR

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

Le syndrome nephrotique

FR

Enurésie

FR

Tousalecole

FR

Fondation du rein

FR

Patients association, chronic kidney disease.

Les reins gonflés 

FR

Transforme

FR

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

ORKID

Germany

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.

UniversitätsKlinikum Heidelberg

GE

German Alport Patient Foundation

GE

Patient association; Parental information on alport syndrome.

aHUS Patient Forum

GE

Vimeo

GE

Media Planet

GE

Hydronephrose

GE

PH slfhelp eV

GE

MedLexi.de

GE

Merck

GE

Azq

GE

Self Help Group

GE

KidsDoc

GE

Soziale Pädiatrie und Jugendmedizin

GE

Cystic kidney disease in children

GE

Kindernetzwerk

EN|GE

German Pediatric Nephrology Association (GPN)

EN|GE|TU

Association of German Ped. Nephrologists.

German Society of Nephrology (DGfN)

GE

Association of all German nephrologists.

Hungary

Hungary Society for Nephrology

HU

Transplant Foundation

HU

National Kidney Program

HU

Nemzeti Vesi Program

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

Guida Genitori

IT

AIRP

IT

ASAL Onlus

IT

Asnit

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.

Bambino Gesu Ospedale Pediatrico

IT

Salute Zinpati

IT

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.

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. 

Comitato I Milani

IT

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.

Telethon Foundation

IT

VACTREL association

IT

Nephrotic Syndrome

IT

The portal of epidemiology for public health

IT

Experimental Zooprophylactic Institute of the Venezie

IT

Jordan

Friends of Kidney Disease patients

AR

Comprehensive Guide to Civil Society Organizations in Jordan.

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.

Lithuania

Medhelpsis

Alfa-women.com

Womensecr

informed

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.

Netherlands

Meander Medisch Centrum

VKS

huisarts.nl

Bedplassen

Kidney Foundation

Center for tubular disorders (KidTube)

KidneyTube

EN

CureiHUS

Kind en Groei

Cystinose Group Nederlands

nieren.nl

Nierstichting

erfelijkheid.nl

Expertise in kaart

New Zealand

Kidshealth, The Paediatric Society Of New Zealand

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.

Poland

Guide for patients and families

Wylecz to

Media Planet

hiperoksaluria Informacja o pacjencie

Zdrowy portal

Zespol AIporta

po.durandhedt.du

MedMe

Stolica Zdrowia

Life health doctor

Portugal

abcMed

PO

Portal da dialise

PO

Infoescola

PO

Pro Renal

PO

Tua Saude

PO

Nortao

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

Spain

Lowe Syndrome Project

SP

AEP

SP

Patient Support Group

SP

Syndromes

SP

Sweden

Medicine

Karolinska Institut

Socialstyrelsen

National Board of Health and Welfare

Cystnjurar

Syrian Arab Republic

Web Teb

AR

Child Clinic

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.

Turkish Cystinosis Association

United Kingdom

Patient Info

EN

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.

PKD Charity

EN

Kidney Research UK

EN

NHS Choices

EN

Lowe Syndrome Trust

EN

United States

Floridahealthfinder.Gov

EN

University of California San Francisco

EN

Orphanet

EN

Mayo Clinic

EN

Genetics Home reference

EN

Uptodate

EN

Oxalosis and Hyperoxaluria Foundation

EN

Vasculitis Foundation

EN

Health Encyclopedia (Univ of Rochester)

EN

American Academy of Family Physicians

EN

American Academy of Pediatrics

EN|SP

Pediatric Oncall Child Health Care

EN

MedicineNet

EN

American Urological Association

EN

American College Of Rheumatology

EN

Children´s Minnesota

EN

American Society of Transplantation

EN

Medline Plus

EN

Children’s National Health System

EN

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.

Medline Plus

AR

Children´s heath

EN

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.

International Childrens Continence Society

EN

The Cystinosis Research Foundation (CRF)

EN

Foundation for cystinosis research.

Boston Children´s Hospital

EN

Oxalosis and Hyperoxaluria Foundation

EN

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

Mostellar Medical Centre

EN

Prune Belly Syndrome Network

EN

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

Centers For Disease Control And Prevention

EN

PCRRT Foundation

EN

Pediatric critical care nephrology.

Cleveland Clinic

EN

International Children Continence Society

EN

Information regarding bedwetting and incontinence.

National Resource Center on Lupus USA

EN|SP

Kidshealth, The Nemours Foundation

EN

Health Information Translations (Ohio State University)

EN|AR

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

Nationwide Children’s Hospital

EN

US National Library of Medicine

AR|EN

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

The Bartter Site

EN

Alport Syndrome Foundation

EN

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

NIDDK (NIH)

EN

NFK

EN

NORD

EN

UNC School Of Medicine

CH|EN|SP

Lowe Syndrome Association

EN

Fairview

EN

UNC Kidney Center

EN