VHL disease info & support

VHL disease info & support

VHL (von Hippel-Lindau) disease

 

von Hippel Lindau (VHL) disease patients battle a series of malignant and benign
tumours 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 ear and adrenals (pheochromocytoma).

VHL Alliance – Comprehensive information for VHL patients and caregivers can be found on the
VHL.org website and in the VHL Handbook available as a Download or by Purchase from US
for $19 includes $9 postage and handling.

There is also for Purchase only the VHL Handbook Kids Edition from US for $15.50 includes
$9 postage and handling.

VHL UK/Ireland Facebook Group – A private Facebook group to discuss, find out information
and meet others affected in your area.

Like VHL UK/Ireland Offical Facebook Page – ‘Like’ to get up-to-date information and to
spread awareness.

INSPIRE Forum – The VHL Family Alliance Group in INSPIRE supports VHL, as discussion
topics within the VHL Community. It provides private patient to patient message board support.
It allows patients to talk with each other about their questions and concerns, while providing emotional
support to one another. You can also write your own journal entries or start or add to discussion threads.
There is privacy control. We strongly advise you to join and make friends.

Rare Connect (VHL)– RareConnect is an alternative to INSPIRE, but has the advantage of providing
language translation facilities. You can look in on RareConnect and then decide if you would like to join
by creating your own user name and password

Other useful information

Healthy living – the importance of diet and lifestyle to VHL and similar genetic conditions

MyVHL: The Patient Natural History Study – take part in the VHL Alliance’s clinical research study-

VHL Alliance Research – the latest VHL Alliance research

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