Pbc annual dinner?

Hi, just a thought, I am in the uk, and wondered if arranged would anyone be up for a annual dinner for pbc sufferers, we could arrange speeches from sufferers and share our feelings. This would be great to bring awareness to this awful condition that is afflicting so many of us and fund raise for more acknowledgment and recognition of this not so rare disease. Please let me know if this would be a good idea, x

38 Replies

  • I think it sounds a lovely idea, I have contact with one other person from this site who lives close and she is great to chat too.

    Hard to know where to do it as we live all over the place, but I still think it would be great even for a chat and a coffee :)

  • I agree with Lisacj, it's a lovely idea but would be difficult to arrange as we live very spread out

  • This may take a bit of organising, I am in Australia but would be interested in combining this with a holiday. I have always wanted to attend Wimbledon so I'm definitely in if its that time of year. Any excuse for a holiday.

    Happy to help spread the word. Maybe we could get some of the major hospitals with a Transplant team to attend, I could always approach the Austin Hospital in Melbourne Australia they are one of the biggest in the world, they do conferences all the time in Europe and the USA so who knows unless you ask.

    This sounds like a plan Sonia40, Lisacj and Nannabn!

  • This sounds good, though the logistics would be a challenge to organise.

  • Thank you all for the kind replies and advice, there must be a solution, maybe we could do more than one, let's try and work out where we all live and try and work it out for all of us. I personally don't mind travelling to Europe, ant suggestions greatfully appreciated, this just isn't a uk problem it's worldwide. I have worked in the healthcare industry for 17 years now and I have never heard of pbc. If we could get specialists to attend would be great , I think they could learn so much more from us. Hugs xxxx

  • If we could find somewhere with good transport links I think many people would be interested. I for one would be there x

  • great idea. Maybe the PBC foundation might be able to help. There are groups round the UK and I am sure there will be many PBC sufferers wanting to attend. Good luck with this.

  • It is certainly a great idea as I live in London near Lisa and volunteer at Kings, so know loads of pbc'ers and consultants, just wouldn't want to do this on my own, but then maybe the PBC Foundation would help??

  • What a lovely idea, i'm willing to help in any way I can. I live just outside of London but dont mind travelling. Any excuse for a break away :-)

  • I'm in if possible,I'm in Glasgow x

  • How about Birmingham as it's fairly central ish and has a airport !!!!!! I live onthe south coast . But London is good to. Xx

  • I would be interested depending on where and when xx

  • I would be interested but would need time to be able to get the money together. It would need to be somewhere with good transport links to be affordable for me and reasonable to attend. I live in the North West of Ireland so there aren't too many links to anywhere but London really unless I want to spend about 2 days travelling

  • great idea, lovely to put faces to names I live in Swansea but will travel.

  • Hi everyone , thank you all so much for replies, I live in Cheshire, and also willing to travel, seems like London would be the best choice, as it's got great travel links, either by air, train or car. I'm really overwhelmed by the response, the more the merrier, it would also be a great fundraiser for the pbc foundation , we need to get evryone on board, consultants, professors, they could all do speeches, this will take time and effort to sort out, of which I am prepared to do with the help of you all. Xxxxx

  • Hello Sonia40- sounds like a great idea! sure there would be enough of us to get our heads together to help plan it! Something I tend to do as part of my job, I,m from Manchester, not far from Cheshire ( which part) x

  • Meeting :- I have so much to do in work and home life before I mention medical time taken up...... BUT I would like to engage - perhaps we might split it up into a few meetings based upon geographical locations / stage of PBC / stage of liver / male v female if there was great uptake and we needed to split it up a little. . Making NO PROMISES what so ever here, but I know of a B&B in North Wales (Castle House Denbigh) that might be able to offer very preferential rates for a small meeting . - just hold that in your heads if of interest.

  • That sounds like a wonderful idea but I live in the USA, I wish I could attend.

  • me too. Im in Alaska Im guessing no one wants to travel this far lol

  • We could teleconference it where people abroad could join In At a certain time

  • Good idea. Willing but depends where and when. I live in Pembrokeshire (West Wales) but can travel to some extent.

  • Wouldn't this be nice! I live in south east of London. But worth consideration to try to meet up. Regards to all.

  • You should contact Robert at the PBC Foundation. Every year they have a PBC volunteers conference. Sounds like the same kind of thing you are contemplating but for the non-voluntary PBC sufferers. Good Luck. I'm in Glasgow. X

  • Great idea. Live in the South of England but would happy to travel to London or Birmingham. x

  • Or to Hungary? It's much closer than Alaska or Australia. BUT it wouldn't be bad idea to change the location each year, and country, and teach people, doctors, what's that. In my country it's not even a chronic disease. It's geat idea, I'd like to see You too!

  • Hi all, I have read all replies, we could as gizocsi says and take it in turns, one in the uk, one in Europe, one in America etc, then everyone gets to have there voice heard. Would this be more suited to you all xx

  • Hi Sonia40 I think this is a great idea, would love to meet other people with PBC, I live in Dorset but have travelled many times to London, so think that would be a good shout! Keep us posted... i know some really good hotel deals in London, and cheap rail websites...

  • hi Boosh . Happy to travel to Dorset , or London , Really need to get some info xxx

  • Hi

    I'd be up for a trip as necessary. I live in Cumbria not quite central but good transport links.

  • Hi jewels I'm from warrington, x that's a great idea of telecommunication.

  • Brilliant idea. I live in Tenerife, Canary Islands but travel regularly to UK on business. Birmingham & London seem to be good locations. I will be in Birmingham this week-end so will check out teleconfering facilities for those that are unable to travel. It will be difficult to organise but not impossible!

  • I'm in Lancashire and though it would be good, given I know how much it costs to take the train down to London (my husband went down for the day recently) I'd need to save up if I was to travel there BUT unfortunately I do not do cities and hated London years ago when I went there for the day several times.

    It does sound like the Conference type thing that the PBC Foundation do annually (?). I think they held their last yr somewhere near Cheltenham if I am right?

    LiverNorth also hold certain meets I noticed from their newsletters. They too are up North in Newcastle.

  • Yes that is a great idea, would it be in the US?

  • Great idea I live in Basingstoke, HAMPSHIRE I would be interested

  • Only just seen this as I've been away but LOVE the idea - I live in London but would be happy to travel anywhere within reason,

  • Hi everyone, thank you all so much for the replys, I was thinking of September next year, dinner dance and conference talks to be held in a hotel, obviously I will try and find one with great commute services. I will find out how much this would cost etc . Will keep you all posted x

  • Also what's your thoughts on holding a charity auction? X

  • I think a dinner would be a great idea, some city in the middle of England? I'd travel

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