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
Written by
michichgo
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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.
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.
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.
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.
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.
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 ....
Just sent you a message in reply to your pm. But I thought I might also try to flag this up with VUK FB admin folk here too. Suzym2u Hidden are you able to help Jonty please ?
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