Inherited Renal Cancer Syndromes

Patient Information

Renal cell carcinoma (RCC) predisposition syndromes are a group of inherited disorders characterised by the development of renal tumours. Patients who are affected by these disorders often require multiple renal surgeries and are at high risk of developing chronic kidney disease (CKD) and end-stage renal failure (ESRF). The disorders are individually rare (e.g. von Hipple-Lindau (VHL) disease has an incidence of ~1 in 30,000) but accurate diagnosis enables lifelong screening, early detection of tumours and reduces morbidity and mortality. Though each of the disorders is associated with an increased risk of RCC, the clinical features and genetic basis of individual disorders varies

VHL UK/Ireland patient group

PTEN UK & Ireland Patient Group (


NICE accredited clinical practice guidelines 

Available here

25th Annual Report

Analyses about the care provided to patients at UK renal centres.

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2022 UKRR AKI Report

A report on the nationwide collection of AKI warning test scores. 

Read the report