Information and Support

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

+44 (0)808-189-0891

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.

VHL Family Alliance

Download the VHL Alliance Handbook

VHL UK/Ireland aims to raise funds via fundraising and donations for research, provide information and support for those affected and raise awareness.

Find out more →

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VHL UK/Ireland Charity is registered in England and Wales 1160381 and Ireland 2010139

Charity Trust No: CT54346