UK support group?

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  • August 15, 2013 at 8:51 pm #74713
    clarem
    Spectator

    Hi Jules,

    I don’t know of any groups – but I’m pretty new to CC as I joined in December when my sister became ill so there may well be a group or two hidden away. http://www.ammf.org.uk/ would be the place to start I guess as Helen who runs the charity might is highly likely to know.

    Gavin is a bit of a guru too on the UK front and he might have a bit more information on any UK based groups. I’m sure he’ll be along soon.

    I’d be all up for a group but being in Scotland would have logistical challenges!

    August 15, 2013 at 1:31 pm #74712
    lainy
    Spectator

    Hi Jules, some years ago I tried to start a Support Group here through the Phoenix Mayo Clinic. It is just about a non issue as there are so few CCer’s. The only thing they said was to join an existing Cancer group. Unfortunately other Cancers would not answer our cause. So, instead, when a new Member appears on our Board I try to meet up with them. It’s like when I started up with my new ONC a few weeks ago I told her about our site and she said, “Oh I have 1 CC patient, she is 30 and has a baby”. Who ever said we wanted to be so unique?

    August 15, 2013 at 1:16 pm #74711
    marions
    Moderator

    Jules…have you checked the AMMF website? http://www.ammf.org.uk/
    It is a great organization and provides numerous connections with other Cholangiocarcinoma patients and caregivers. They also have an active Facebook site. Good luck and I hope for many other UK members to chime in and possibly help you establish a face to face support group. I believe a good way to start is with the major cancer center focusing on this disease. Helen has noted those on her website.
    In the US only Emory Medical Center, Atlanta, had a support group initiated by our Mark Stevens. I don’t know the current status of this group.
    Hugs,
    Marion

    August 15, 2013 at 9:14 am #8771
    jules1982
    Member

    Hi all,

    I have been looking around for a carer’s support group down here in Oxford, UK, but I am struggling to find anything that is outside of working hours or specific to CC (although this is unsurprising!). I’m a psychologist by trade and I know how important it is to have support from others who are going through similar experiences, hence joining this group. I was wondering whether anyone has every organised a meet-up in the UK at any point or even a Facebook group? I see that a few of our US members have met up and have found this really helpful. Anyway, I feel that further developing a good support network in the UK could be really good and I wondered what our UK members think about this? Maybe there is already a group that meet-up and I don’t know about it? :)

    Jules

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