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

Its objectives are:

To relieve the charitable needs of persons who have von Hippel-Lindau Syndrome (VHL) and similar genetic conditions such as Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) AND Birt-Hogg- Dubé Syndrome (BHD) and their families and carers in the UK and Ireland for the public benefit in particular but not exclusively by:
1) Providing support and advice regarding their genetic conditions,
2) Providing funds for research into the genetic conditions and for equipment to assist with such research,
3) To advance the education of the public in all matters concerning the genetic conditions.

von Hippel Lindau (VHL) disease patients battle a series of malignant and benign tumours/cysts their whole lives. The VHL gene is involved in many other forms of cancer. Manifestations commonly occur on the retina, brain and spinal cord, kidneys, pancreas, inner ears and adrenal glands (pheochromocytoma).