Privacy Policy

VHL UK/Ireland are committed to protecting all stakeholder data by ensuring that we will not share email lists and contact details with third parties unless you have specified that we can do so.  We will also not contact you regarding marketing/other updates unless you have specified you are happy to be contacted.

Ways we collect data

We require an opt in if you would like to receive updates, such and patient and support updates.

We use Google Analytics to collect standard internet log information and details of visitor behaviour patterns, to make sure our website is optimised to meet visitors requirements. This information is only processed in a way which does not identify anyone.

You are entitled to view, amend, or delete the personal information that we hold. Email your request to our data protection officer at

This privacy policy was last revised on 24th May 2018.




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

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Copyright © 2013 - 2019

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

Charity Trust No: CT54346