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 http://vhl-uk-ireland.org/
PTEN UK & Ireland Patient Group (https://ptenuki.org/
