Patient Education

Platform for primary hyperoxaluria.

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.

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

Information regarding ESKD

Information on ADPKD and ARPKD

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.

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

Organ donation orientation and laws. Brazilian transplant registry news.

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 and family support list.

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).

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

Research, Educational Material, Biopsy Requests.

Support for Egyptian families with cystinosis.

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

Website of the Egyptian Society of Nephrology.

Website of Mansoura Urology and Nephrology Center, Egypt.

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

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

Inherited renal diseases.

Patients association, genetic renal diseases.

Patients association, chronic kidney disease, forums.

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

Patients association, chronic kidney disease.

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

Parental infomation on rare kidney diseases.

Association of ped. urologists and nephrologists.

Parental information on cystic kidney disease.

Patient association; Parental information on alport syndrome.

Association of German Ped. Nephrologists.

Association of all German nephrologists.

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

Advice about drug procurement.

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

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

Registry and HUS disease information.

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

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

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.

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

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

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.

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.

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.

Comprehensive Guide to Civil Society Organizations in Jordan.

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

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

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

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.

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

Contains educational material on hypertension for patients.

Educational activities and information about kidney diseases.

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

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

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

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

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

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.

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

Foundation for cystinosis research.

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

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

Pediatric critical care nephrology.

Information regarding bedwetting and incontinence.

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

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

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

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