The development of evidence based clinical care pathways in inherited RCC has been identified as a priority owing to the lack of fully commissioned screening programmes nationally. Several published expert led disease management guidelines are being evaluated. Therefore the familial RCC RDG will set as a priority the development and validation of evidence based care pathways that reflect both national and international opinion and can be adopted by NHS commissioning groups.

The familial RDG will work closely with other RDGs, the Renal Registry and the Renal Association to produce advice for commissioners that relate to specific aspects of these diseases as well as more general advice that relates to rare diseases, CKD and renal replacement therapy.

VHL UK/Ireland patient group http://vhl-uk-ireland.org/

PTEN UK & Ireland Patient Group (https://ptenuki.org/

RDG Lead(s)
  • Professor Eamonn Maher, University of Cambridge, RDG Lead
Patient representative(s)
  • Mr Graham Lovitt, VHL UK/Ireland (UK Patient Organisation for Inherited RCC Predisposition Syndromes)
  • Mr Ian Stock, PTENUKI, the PTEN UK and Ireland Patient Group
Other members
  • Dr Marc Tischkowitz, University of Cambridge
  • Dr Daniel Gale, Royal Free Hospital, London
  • Dr Lucas Foggensteiner, Queen Elizabeth Hospital Birmingham
  • Mr Rupesh Bhatt, Queen Elizabeth Hospital Birmingham
  • Dr Emma Woodward, St Mary’s Hospital, Manchester