On November 12th. 2002 the first meeting of the re-formed V.H.L. 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 welcome, and so we started on our voyage of discovery as to what the group wanted, and how we saw our group functioning.

The objectives of our group are:

1) To give relief to patients and their families suffering from V.H.L.

2) To give relief in times of financial distress to members and their dependants.For example we have given a grant for two members to have a holiday, something they had not enjoyed for many years. A young member was given help to buy a computer to enable her to study at home for her A levels following several weeks away from school recovering from neuorosurgery. Another member was given a special walking aid with trolley attachment to assist mobility and the carrying of items around the home.

3) To encourage, promote and assist research into V.H.L and other related conditions.

These objectives are to be achieved by personal contact, between group members, or by me through the e-mail and the phone number give on this website and other literature.We need to provide literature to assist members, and also as part of our role as educators of the public. A basic factsheet is available by clicking on to 'factsheet' on the home page.

To date I have had several phone calls and e-mails. Mostly these are from newly diagnosed people, or members of their families. These have had a wide geographical spread. I am more than happy to help these individuals as there are only two areas at present running support groups; ourselves and one run from Guy's Hospital. The address of Guy's is included in the list of Regional centres for anybody who feels that it would be an easier venue for them.

I am hoping that others will voluteer to start a group in their areas, and if I can be of any assistance I would be more than happy to help.

So that's who we are, where we are, and what we do. Please contact us at any time.

Just one request- please let me have your entries for this website.It would be great to hear of your experiences, both good and bad. We are all on a learning curve and need to learn from one another. Come on! Get your pens and paper out and write to me, or boot up your computer and e-mail your thoughts and feelings for inclusion on this site. This is a cry from the heart!

Best wishes
Mary.