Rare kidney conditions are, by definition, ones most families have never heard of before the diagnosis. The organisations below publish reliable information and, in many cases, connect families facing the same condition.
Information written for one country may not match how a condition is investigated, treated or funded in Canada. Bring anything you read here to your child’s nephrologist, who can tell you what applies to your situation.
Where to start
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IPNA patient education
Material collected by the International Pediatric Nephrology Association, searchable by disease, language and country of origin, in more than a dozen languages. The best first stop for a specific diagnosis.
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AboutKidsHealth
Paediatric health information written and reviewed by clinicians at The Hospital for Sick Children, in plain language and several languages.
Nephrotic syndrome and FSGS
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NephCure
Focused on nephrotic syndrome and FSGS, with material for families as well as for adults living with the condition, and a research and clinical trial section.
Haemolytic uraemic syndrome and complement disorders
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aHUS Canada
A Canadian patient organisation for atypical haemolytic uraemic syndrome, run by families affected by it.
Metabolic and inherited conditions
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Cystinosis: access to treatment in Canada
CAPN’s page on access to Cystagon and Procysbi for nephropathic cystinosis, including the Health Canada Special Access Program criteria and CAPN’s advocacy on the issue.
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Cystinosis Research Foundation
Research funding, family conferences and condition information for cystinosis.
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Canadian Fabry Association
Support and information for Canadian families affected by Fabry disease.
Systemic conditions affecting the kidney
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Lupus Canada
National organisation for people living with lupus, which can involve the kidneys as lupus nephritis.
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Kidney Cancer Canada
Patient-led organisation for kidney cancer, including the rare forms that occur in childhood.
Is your child’s condition missing from this page? Tell us at contact@capneph.ca and we will look for a reliable source to add.