On 12th November 2002 the first meeting of the re-formed Von Hippel-Lindau Contact Group took place at St. Mary's Hospital, Manchester. This meeting was called to establish whether or not people in the region wanted such a group. 12 people attended, and 10 sent their apologies. As so much interest had been shown, it was agreed that a group in the North-West would be useful, and so we started on our voyage of discovery as to establish what the group wanted to achieve, and how we saw our group functioning going forward.

1) To give relief to patients and their families suffering from VHL.

2) To give relief to members and their dependents in times of financial distress.

For example:

- We have given a grant for two members to go on holiday, something they had not enjoyed for many years.

- A young member was given help to buy a computer enabling her to study for her A-Levels from home, whilst recovering from Neurosurgery.

- Another member was given a walking aid with trolley attachment to assist mobility and the carrying of items around the home.

3) To encourage, promote and assist into VHL and other related conditions.

These objectives are to be achieved through personal contact; between group members, between the group organisers via email or telephone contact, both of which can be found on the 'Contact' section of this website and other literiture.

We need to produce literiture to assist members and fullfil out role as educators of this condition. Please find information through the 'Factsheet', 'Articles' and 'Research News' sections of this website.

To date we have had numerous phone calls and emails from all over the United Kingdom, mainly from newly diagnosed sufferers or their families. We are more than happy to help to offer support and information, as there are only two areas, at present, with support groups, including ourselves. The other is based at Guy's Hospital, for information about this support group please find the address listed in the 'Genetic Centres' section.

Anyone willing to start a support group in their local area will have our full backing and will be given all the support possible, as it will be of great benefit to all within the VHL community.

Please contact us at any time.

We would love to hear your expriences, both good and bad, hopefully including these on this website for inspiration and help understanding.