Rare Renal - Information on rare kidney diseases

It is often hard to find detailed information on rare diseases because they affect so few patients. Doctors may only treat a few patients with a rare disease in their whole career. This site aims to provide information and links to 27 different rare renal conditions and their current activity such as patient support groups and research.

Please select a condition from one of the following pages.

  • Patient information describes conditions currently recruiting for the RaDaR rare disease registry. A Glossary provides further explanations of specific medical terms
  • Clinician information has more detailed clinical information about conditions
  • Rare Disease Groups (RDGs) are run by experts in particular conditions who can provide detailed information and advice on tests, treatment and research.

Other pages describe the RaDaR registry and how to recruit. There is a page for research publications. Please contact us if you are interested in setting up a new group or if you are a patient/parent who would like to take an active part in shaping the UK research agenda for your/your child’s condition. Please also contact us if you would like to take part in RaDaR – the rare disease registry – and we can put you in touch with the research team at your local hospital who can send you the appropriate consent forms.


 

Guidelines

NICE accredited clinical practice guidelines 

Available here

22nd Annual Report – data to 31/12/2018

Audit measures presented are directly linked to the Renal Association’s guidelines.

Available here

Consultations

We are frequently asked to nominate experts to respond to consultations. A full list of open and submitted responses is available. 

 

Find out more