Hi everyone. For those of you in the Yorkshire and Humberside areas, we've just launched a new "Yorkshire Vasculitis Support Groups" web site.
It's currently a bit of a work in progress but hopefully will be useful as a central point of local support information for the area.
Cheers,
Richard.
Great Idea , we the East Midlands Vasculitis Support Group have been asking if we could have website of our own for months. But, were told that each support group would be able to have a page on the VUK website they could manage themselves. Very confusing 
Yes, having a page for each support group on the VUK website would be great too. But with two support groups and a couple of Yorkshire support contacts, we felt that having our own site would give us more flexibility to add local content that might be useful to people in the area living with vasculitis. Not only to allow us to promote the Yorkshire support groups but also to include links to local resources, hospitals, charities & so on.
An email had recently been sent out to all the local support groups to ask if they were interested in having a page on the VUK website
, which would be totally controlled by themselves. Then the feedback from this email was going to be discussed by all the trustees and the leaders of the support groups. I just think the promotion of the Yorkshire Support group website through the VUK website should have been discussed with all the trustees of VUK and not just one trustee. Just to be fair to all the local support groups.
Susan
i live in yorkshire so im pleased about any extra resources available to help support our group and its fantastic that volunteers are giving up their time to provide the best possible help and info to others in the area. Although with my work hat on as a communications manager I'd have thought it would be better for groups to each have a page on the main website to avoid duplication and make it easier for all to find the information? maybe the way the central website has been set up makes that hard to manage on a practical level? i do think if you have a single source of reliable information it is easier to manage and less confusing for the general public. For each support group to have their own facebook site may be an alternative? as a communications tool facebook can be adapted more easily for engagement and be used for webchats, blogs etc I dont want to detract anything from the keen yorkshire and humber group who want to provide a great support service - but maybe the starting point needs to be look closely at what extra do people need that isnt provided already? it is a big commitment to keep on top of providing a series of good timely, accurate and responsive websites.
Hi Katie,
The support groups are broadly independant from VUK, although VUK very kindly promote them and offer support and even some financial help to get them started. Having a page on the VUK web site to promote each group is a great idea but ultimately a single page is only really enough to advertise upcoming events and has administration issues in its own right.
What we hope to achieve is a more comprehensive source of local information for people in the Yorkshire area, not only to promote the support groups' meetings but to provide links and information on local resources that might benefit those in the area with vasculitis. In the longer term we hope to also build an archive of summaries of our Yorkshire meetings and where possible, some of the presentations that our guest speakers have given.
This is not something new and radical as just off the top of my head I know that both Lupus UK and Arthritis Care have central web sites with a number of separately run satellite web sites for local support.
Personally I think FB (and HU) have their place for self supporting communities and the VUK ones are very successful in this. But as a source of local information I do think that a web site is a better vehicle.
Thank you Katie for your well considered comment, this was exactly what John and the trustees were hoping to do, so each support group could have their own page on the VUK website to manage themselves, if they chose to do so. There had been a discussion with a local support group for having a "Midlands" Support Group Website, to include the three Support Groups here in the Midlands, but this was decided, it was probably not the way to go for exactly the reasons you give above.
The subject will brought up and discussed with all the trustees over the next few days.
Susan
NEW VASCULITIS SUPPORT GROUP, SOUTH WALES.
First Meeting 24th June 2012.
East Anglia Support Group
