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Africa

African Pediatric Nephrology Association

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OxalAfrica

Platform for primary hyperoxaluria.

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Argentina

Hospital Italiano de Buenos Aires

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

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Sociedad Argentina de Pediatría

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
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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.

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Australia

The Royal Children’s Hospital Melbourne

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Monash Childrens Hospital

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PKD Foundation Of Australia

Information on ADPKD and ARPKD

Kidney Health Australia

Information regarding ESKD

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Brazil

Muitos Somos Raros

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Patient Support Group For Cystinosis

Patient and family support list.

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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.

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Brazilian Society of Solid Organs Transplants

Organ donation orientation and laws. Brazilian transplant registry news.

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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.

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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.

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Patient Support Group For Cystinosis

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Canada

Living with Kidney Disease:

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Choosing a Dialysis Therapy

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Kidney Health Resources for Chronic Kidney Disease (Kidney Twins)

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Canadian Association of Paediatric Nephrology

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La Maladie Rénale Chronique

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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).

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SHUa Canada

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Montreal Childrens Hospital

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McMaster Childrens Hospital

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China

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CHINA-DOLIS CENTER FOR RARE DISORDERS

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龙华古寺生命源泉透析基地 – 儿童肾病关爱网

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知乎

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百科名医

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百度百科

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搜狐视频

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医院的科普书~~解读肾移植

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LIFESPRING

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

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丁香医生

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Denmark

DANISH KIDNEY ASSOCIATION

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Egypt

HOPE TEAM: ALEXANDRIA UNIVERSITY

Group aiming at the social and financial support of poor pediatric patients with renal disease.

alaa_thabet@hotmail.com

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EGYPTIAN SOCIETY OF NEPHROLOGY AND TRANSPLANTATION VIRTUAL ACADEMY

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

EGORD

Rare renal diseases.

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MANSOURA UNIVERSITY WEBSITE

Website of Mansoura Urology and Nephrology Center, Egypt.

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EGYPTIAN SOCIETY OF NEPHROLOGY

Website of the Egyptian Society of Nephrology.

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CYSTINOSIS SUPPORT GROUP

Support for Egyptian families with cystinosis.

neveenase@yahoo.com
neveen.soliman@hotmail.com

CAIRO UNIVERSITY CENTER FOR PEDIATRIC NEPHROLOGY AND TRANSPLANTATION

Research, Educational Material, Biopsy Requests.

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Europe

ERKNET- EUROPEAN REFERENCE NETWORK FOR RARE KIDNEY DISEASES

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FEDERG

Inherited renal diseases.

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EUROPEAN HYPEROXALURIA CONSORTIUM

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WORKING GROUP ON PSYCHOLOGICAL ASPECTS OF CKD

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France

ORKID

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TRANSFORME

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

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LES REINS GONFLÉS

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FONDATION DU REIN

Patients association, chronic kidney disease.

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AMSN

Patients association, nephrotic syndrome.
Syndrome.nephrotique@laposte.net

TOUSALECOLE

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ENURÉSIE

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LE SYNDROME NEPHROTIQUE

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LE RETOUR DES REINS TROGNONS

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RENALOO

Patients association, chronic kidney disease, forums.

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Germany

GERMAN SOCIETY OF NEPHROLOGY (DGFN)

Association of all German nephrologists.

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GERMAN PEDIATRIC NEPHROLOGY ASSOCIATION (GPN)

Association of German Ped. Nephrologists.

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KINDERNETZWERK

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CYSTIC KIDNEY DISEASE IN CHILDREN

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KIDSDOC

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SOZIALE PÄDIATRIE UND JUGENDMEDIZIN

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SELF HELP GROUP

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MERCK

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MEDLEXI.DE

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Hungary

NEMZETI VESI PROGRAM

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NATIONAL KIDNEY PROGRAM

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TRANSPLANT FOUNDATION

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HUNGARY SOCIETY FOR NEPHROLOGY

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India

ATYPICAL HUS

Registry and HUS disease information.

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SAVE YOUR KIDNEY

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

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KIDNEY FOUNDATION FOR CHILDREN

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

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CYSTINOSIS CHAPTER OF INDIA

Advice about drug procurement.

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INDIAN SOCIETY OF PEDIATRIC NEPHROLOGY

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

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Italy

EXPERIMENTAL ZOOPROPHYLACTIC INSTITUTE OF THE VENEZIE

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THE PORTAL OF EPIDEMIOLOGY FOR PUBLIC HEALTH

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NEPHROTIC SYNDROME

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VACTREL ASSOCIATION

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TELETHON FOUNDATION

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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.

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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.

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COMITATO I MILANI

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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.

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SOCIETÀ ITALIANA DI NEFROLOGIA

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

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Jordan

FRIENDS OF KIDNEY DISEASE PATIENTS

Comprehensive Guide to Civil Society Organizations in Jordan.

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Kuwait

KUWAIT MEDICAL ASSOCIATION

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

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Lithuania

INFORMED

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WOMENSECR

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ALFA-WOMEN.COM

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MEDHELPSIS

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Mexico

MEXICAN KIDNEY FOUNDATION

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

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Morocco

MOROCCAN ASSOCIATION FOR COMBATING KIDNEY DISEASES

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

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Netherlands

EXPERTISE IN KAART

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ERFELIJKHEID.NL

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NIERSTICHTING

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NIEREN.NL

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CYSTINOSE GROUP NEDERLANDS

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KIND EN GROEI

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CUREIHUS

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KIDNEYTUBE

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CENTER FOR TUBULAR DISORDERS (KIDTUBE)

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KIDNEY FOUNDATION

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New Zealand

KIDSHEALTH, THE PAEDIATRIC SOCIETY OF NEW ZEALAND

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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.

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Poland

LIFE HEALTH DOCTOR

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STOLICA ZDROWIA

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MEDME

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PO.DURANDHEDT.DU

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ZESPOL AIPORTA

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ZDROWY PORTAL

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HIPEROKSALURIA INFORMACJA O PACJENCIE

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MEDIA PLANET

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WYLECZ TO

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GUIDE FOR PATIENTS AND FAMILIES

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Portugal

NORTAO

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TUA SAUDE

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PRO RENAL

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INFOESCOLA

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PORTAL DA DIALISE

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ABCMED

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Republic of

KOREAN SOCIETY OF PEDIATRIC NEPHROLOGY

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Singapore

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

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South Africa

NATIONAL KIDNEY FOUNDATION OF SA

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SOUTH AFRICAN RENAL SOCIETY

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RENAL CARE SOCIETY OF SOUTH AFRICA

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Spain

SYNDROMES

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PATIENT SUPPORT GROUP

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LOWE SYNDROME PROJECT

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Sweden

CYSTNJURAR

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NATIONAL BOARD OF HEALTH AND WELFARE

SOCIALSTYRELSEN

KAROLINSKA INSTITUT

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MEDICINE

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Syrian Arab Republic

CHILD CLINIC

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WEB TEB

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Turkey

TURKISH CYSTINOSIS ASSOCIATION

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TURKISH CYSTINOSIS ASSOCIATION

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

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KIDNEY FOUNDATION

Educational activities and information about kidney diseases.

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TURKISH HYPERTENSION ASSOCIATION

Contains educational material on hypertension for patients.

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TURKISH PEDIATRIC NEPHROLOGY ASSOCIATION

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

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United Kingdom

LOWE SYNDROME TRUST

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NHS CHOICES

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KIDNEY RESEARCH UK

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PKD CHARITY

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RARE RENAL DISEASE

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

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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.

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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.

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PATIENT INFO

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United States

UNC KIDNEY CENTER

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FAIRVIEW

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LOWE SYNDROME ASSOCIATION

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UNC SCHOOL OF MEDICINE

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NORD

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NIDDK (NIH)

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ALPORT SYNDROME FOUNDATION

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

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THE BARTTER SITE

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US NATIONAL LIBRARY OF MEDICINE

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

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