About FEDERG
Why our name matters
Why FEDERG names "rare or genetic" kidney diseases explicitly.
Rare kidney diseases are not common CKD
There are at least 150 rare kidney disorders, with different causes and very specialised care needs. Each one affects only a small number of people, but together they account for roughly 5–10% of chronic kidney disease cases.
Different origins
Rare kidney diseases can be genetic, congenital, immune-mediated or secondary to other conditions. Around 80% have a genetic origin. Our name includes all patients, whatever the cause.
Genetics is central
Many of these diseases are inherited in autosomal dominant, autosomal recessive, X-linked or mitochondrial patterns. This affects diagnosis, treatment, family planning, genetic counselling and access to trials. Some genetic conditions, such as Alport syndrome or polycystic kidney disease, are not always classed as rare, but they belong here too.
Visibility
A precise name helps European institutions, research networks and funders recognise who we represent, and distinguishes us from broader CKD organisations.