VHL/UK Ireland – VHL Syndrome Support

What

Charity for people living with von Hippel Lindau (VHL) syndrome and similar genetic conditions. It offers education, links to affiliated support groups, support and advice including a free to download handbook written with up to date information on diagnosing and treating VHL. For information on support groups, email the organisation.

Where

England, Scotland, Wales and Northern Ireland

Who

People living with von Hippel Lindau syndrome

Available for friends and family

Last updated 21/07/2026 by Cancer Care Map