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/
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| Patient representative(s) |
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