Read the guidelines from 2018 on VHL Screening presented by Dr Richard Sandford, Eamonn Maher and Fiona Lalloo.
VHL should be suspected in individuals with or without a family history of VHL who have:
• retinal angioma, especially in a young individual
• spinal or cerebellar hemangioblastoma
• adrenal or extra-adrenal pheochromocytoma
• renal cell carcinoma (RCC), if the individual is younger than age 47 years or has a personal or family history of any other tumour typical of VHL
• multiple renal and pancreatic cysts
• neuroendocrine tumours of the pancreas (pNET)
• endolymphatic sac tumours (ELST)
• less commonly, multiple papillary cystadenomas of the epididymis or broad ligament
Read about the suggested routine surveillance protocol for patients with VHL (Von Hippel-Lindau Disease), the centres who contributed to this study and the examples compared across a number of centres in the UK.
Annual Patient Support Group Held at Addenbrooke’s, Cambridge
