Von Hippel-Lindau (VHL).
Simply, VHL is a genetic condition whereby there is a flaw in a specific gene which in a non-VHL person prevents the growth of tumours. The VHL condition therefore results in tumours growing, mainly down the spine, in the brain and behind the eyes.
It is estimated that 1 in 36,000 people has the condition with around 80% of these cases being passed from parent to child and in the remaining 20% of cases the condition is spontaneous. Scott is part of this 20%, and in these spontaneous cases the resulting symptoms are often much more severe.
It is estimated that 1 in 36,000 people has the condition with around 80% of these cases being passed from parent to child and in the remaining 20% of cases the condition is spontaneous. Scott is part of this 20%, and in these spontaneous cases the resulting symptoms are often much more severe.
the vhl alliance (VHla).
The VHL Alliance is a charity based in the USA, and is dedicated to research, education, and support to improve diagnosis, treatment, and quality of life for those affected by VHL.
Von Hippel-Lindau Contact Group (VHLCG).
The VHL Contact Group was a small registered charity (No. 1000722) set up and managed by an individual called Mary Weetman. This charity was the only VHL specific charity in the United Kingdom which demonstrates the rarity of the condition.
Unfortunately the charity closed down in 2013, with the remaining funds being ploughed into research of the condition.
Unfortunately the charity closed down in 2013, with the remaining funds being ploughed into research of the condition.