Hi folks! Facebook question here...
I used to belong to a closed group on Facebook, "Vasculitis UK". Members included very, very informative Vasculitis patients and advocates and a great deal of vasculitis questions and concerns were shared.
Does anyone know what might have happened to the group? Currently, a group of the same name exists but it's not a closed (private to members only) group and it appears to be a means of posting fundraising items.
**I miss the old group.**
Thank you!
Michele
It's there!
Lots of "v's" joined in a circle as the profile pic
Louise --
Thanks! Sadly, I'm don't think it's the same group to which I belonged for a few years. It's not a "closed" group and it appears to be more of a promotional Vasculitis UK page.
The former page allowed users to post disease related questions (and reponses)-- sometimes very personal and private in nature. I miss the disease-specific forum.
It's closed - I can approve you to join
An people post all sorts of personal questions & have lots of support
The name has changed slightly .. Had Stuart strange in the group name
It's a very useful facebook group. Do join & you may find it's the same.
It's definitely still there! Here is the link
vasculitis.org.uk/useful-links
Just send a joining request and one of the admins will add you.
Hi Keyes and thanks for the link. I selected the link for the closed group: "Facebook (Vasculitis UK): - Become a member of Facebook - Vasculitis UK. This is a closed group where only members can see your post."
I then receive the following message:
This content is currently unavailable
.
The page you requested cannot be displayed right now. It may be temporarily unavailable, the link you clicked on may have expired, or you may not have permission to view this page.
I have attempted to find the link on every device I own but nothing seems to locate a closed Vasculitis UK group.
**Hello to my friends across the Pond.**
I relentlessly continue to connect to a closed Vasculitis UK Facebook group but am having no luck. The link on the Vasculitis.org.uk web page doesn't work for me. I receive the following error message: "
This content is currently unavailable
.
The page you requested cannot be displayed right now. It may be temporarily unavailable, the link you clicked on may have expired, or you may not have permission to view this page. "
Searching directly on Facebook leads me to a Vasculitis UK group that is liked by 1,812 people. The logo consists of a lot of V's forming a circle and the logo reads Vasculitis UK. It is not a closed group. My search for actual FB groups leads me to six Vasculitis UK groups -- none of which contain more than 114 members.
I can't apologize enough for my continued computer inefficiencies!!!
Hi folks. I think it's a little confusing because there are 2 Vasculitis UK facebook pages. One open group, as you've found, is for general news and fundraising and the other closed group is for support.
As far as I can see the website links should work so I'm not sure why you're having trouble. I think Susan Mills looks after the website (or knows who does) and may be able to help there.
But try the following link to get to the closed group and request to join. Hopefully this will work for you but shout if you're still having problems.
facebook.com/groups/1635100...
Hello Richard-thank you! This is becoming a bit embarrassing as I still am unable to locate the closed group. The link you so kindly provided elicits the same error message as that of the link provided on the vasculitis.org web site.
I remain flummoxed!
If you PM me your Facebook name I can try and find you on Facebook and add you to the site. I clicked on the link that Richard provided and it took me to the group.
Lynn
Hello the name of the group changed, it's now Vasculitis UK ( support group)
I am a member, hope you find us again, the group is a lifesaver!!!!
This is posted a year later than the original posting of being unable to access the very useful Vasculitis UK (Support Group) which is it's new name.
I'm unable to find this account when I log into FB, but if I login as my wife I can see and can ask to join if I wanted to, but in her name. So WHAT is going on? There is something clearly not been set up correctly by renaming the group and allowing previous members to access.
I sent a Facebook PM to Susan Mills about this on 16 July, but she never replied.
This is the link that works for my wife, but not for me ....
facebook.com/groups/1635100...
Please can someone help me resolve this problem ... thank you.
Update .... the above link is not quite correct. This is the link that works with my wife's account but not with mine ....
facebook.com/groups/1635100...
You can see that it has "7695" added on the end.
michichgo,
Do you ever manage to get into this link? Please update us ... many thanks.
Nope. Never could do it. I keep meaning to create a new Facebook and email account, Di that I may request membership.
The only reason I can glean from my attempts, is that I was banned from the group, though I can't fathom why that would be.
The UK was my favorite support group, though I live in the U.S.
Does anyone know where I can go in the U.S.? For Urticarial vasculitis?South East London North West Kent Vasculitis Support Group Meeting Saturday January 19th.A question on behalf of someone else, asked this morning by email, a new member to Vasculitis UK
NEW VASCULITIS SUPPORT GROUP, SOUTH WALES.
First Meeting 24th June 2012.Vasculitis Rare Disease Working Group Meeting April 18th 2012
