Patient Information and Support
VHL UK/Ireland supports those affected by VHL (von Hippel Lindau disease), HLRCC (Hereditary Leiomyomatosis and Renal Cell Cancer and FD or Fumarase Deficiency) and BHD (Birt-Hogg-Dubé Syndrome). If you have any feedback or suggestions, please contact us via the Facebook group or email us
Genetic Centres in UK/Ireland
Download our Genetic Centre list – Locate your nearest Genetic Centre in the UK (Genetic Alliance List) for screening, specialist requirements and more information.
UK Freephone helpline
use MY data
use My data – use MY data is a movement for patients which aims to build confidence in the use of patient data for analysis and research. Please consider joining.