Project – UK Registry for VHL disease and other Inherited kidney tumour syndromes

Project – UK Registry for VHL disease and other Inherited kidney tumour syndromes

VHL UK Ireland have granted an amazing £40,000 for this project. Please read below for an update on this fantastic project. It’s projects and research like this that will help others in the future!

” With support from VHL UK / Ireland we are establishing a national registry for VHL disease and related disorders. After a rigorous application process the new registry has been accepted to become part of the well established National Registry of Rare Kidney Diseases (RaDaR) initiative (see www.renalreg.org ). The design and content of the registry is being finalised and we are planning to incorporate PaientView into the registry (see https://www.patientview.org/).

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