PBCers UK Facebook group

Being based in the UK I've tried to join the PBCers UK Facebook group, I think I must have been rejected the first time, although I have no idea why, and now the page is coming up as unavilable, presumably meaning I have been blocked - there is no way for me to get in touch with them to find out what is going on. I appreciate not every grooup can be as welcoming as this one, but it does seem rather rude, not even being given an explanation. Is anyone a member and might be able to shed some light?

7 Replies

  • Hi weavergirl

    I tried to join this group also but never got a reply. I don't know if it is active but as this forum proved to be so good I did not bother further. Have you joined the PBC Foundation for UK or PBCers.org in the USA? Both have a face book presence as well as web page.

    best wishes

  • Oh dear facebook is a mine of dodgy folk. Thanks for putting my mind at ease, and yes I am a member of those groups too, and very useful they are too! Thanks for the reply!

  • I think the administer is going through a lot of personal problems at the moment, I wouldn't think she would have blocked you intentionally , though she is wary because someone has made a false profile of her. I wouldn't take it personally . It's not a very active group anyway.

  • Oh dear sorry to hear that, it is a shame though! I hope she manages to sort through it all! Thanks for the reply!

  • Hello weavergirl,

    Have you registered with The PBC Foundation? If not, it is completely free of charge to do so and can be done through our website, pbcfoundation.org.uk or alternatively as you are in the UK, we can post a registration form to you. Once you have registered you will benefit in a number of ways. You will be able to access the Existing Members section on the website where you will find a wealth of information and our compendium called Living with PBC.

    We also deliver self-management sessions throughout the UK which are free to attend. These are listed in our diary section of our quarterly magazine called The Bear Facts which you will receive and on our calendar on our website. Many find these beneficial in a number of ways but this is often the first opportunity they have had to meet someone else with PBC.

    In addition to these, we also have a Helpline service wherre you can chat to one of the team in complete confidence about anything.

    We also have our Facebook Page and Twitter (@pbcfoundation).


    Office: 0131 556 6811

    I hope you find this of help weavergirl.

    Best wishes

    The PBC Foundation

  • Hi - Thanks so much for your reply. I registered just before Christmas and I have to say I was blown away by the wealth and quality of information sent to me and available online through your website. This is all very new to me, and to know you are there has been a massive relief. I do find it hard to believe that you do as much as you do, considering your size and no doubt limited resources. I look forward to doing what I can in the future to support you, as you do us!

  • You are most welcome and happy to help. If we can be of further help, please don't hesitate to contact us.

    Best wishes

    The PBC Foundation

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