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Latest News

The PBC Foundation is the only UK based organisation that specifically deals with PBC.

Latest News

Latest News

  • PBC Day 2017 - what's happening, where?

    PBC Day 2017 - what's happening, where?

    Posted: Aug 11th, 2017

    Click on the purple pins below for more details on events happening for PBC Day in your area.  To add your own event, fill in the form at this link: PBC Day 2017  
  • PBC Day 2017

    Posted: Aug 10th, 2017

    PBC Day 2017 is fast approaching. As ever, the aim is to encourage "Movement As Medicine" by taking part in 30 minutes of cumulative activity throughout the day.  Could this year be the catalyst for a change in your life, as it...
  • Six stone lost in 15 months -  Movement as Medicine transformation stories

    Six stone lost in 15 months - Movement as Medicine transformation stories

    Posted: Jul 20th, 2017

    Our aim, almost all of the time but especially on PBC Day, is to promote Movement as Medicine.  The idea that very modest levels of physical activity (30min cumulative per day) can have a marked impact upon your physical...
  • Patient Survey - Have your say

    Posted: Jul 16th, 2017

    As ever, the wider professional world involved in seeking greater understanding of PBC (and developing treatment for it) is eager to seek your experience as patients.  Our collective voice, made possible by many individual contributions,...
  • Vacancy - Bookkeeper & Accounts Assistant

    Vacancy - Bookkeeper & Accounts Assistant

    Posted: Jun 15th, 2017

    We are an internationally active charity, founded in 1996 and based Edinburgh’s city centre, who prides itself on the quality of advice and support it provides to those affected by the rare and incurable autoimmune disease, PBC. ...
  • 12 events in 12 months - Charity Fundraiser

    Posted: Jun 2nd, 2017

    Jasmine has taken on a year of fundraising challenges for us, in memory of her mum. But there is no need for us to tell you about here efforts, instead we'll let her tell you in her own words (ans we'll update this page as she progresses).    12...
  • Alan takes on the West Highland Way

    Alan takes on the West Highland Way

    Posted: May 24th, 2017

    Walking 96 miles across some of the most mountainous landscapes in the UK might not be everyone's idea of a lifetime aspiration, but for our Operations Manager, Alan, it most certainly was on the bucket list.  As motivation for...
  • 1000 survey responses in a weekend - Thank You

    1000 survey responses in a weekend - Thank You

    Posted: May 2nd, 2017

    What a wonderful community we have. In response to our survey sent out last week, we received over 1000 responses in the space of a weekend. Even more impressive considering we only sent to email recipients on our database, so about...
  • PBC Conference Newcastle | 23rd June 2017

    PBC Conference Newcastle | 23rd June 2017

    Posted: Apr 28th, 2017

    We're holding a PBC Conference in Newcastle on the 23rd June 2017.  Guest Speaker: Professor David Jones of Newcastle University To attend, download a booking form here: Newcastle Conference Booking Form.pdf
  • London Marathon 2018

    London Marathon 2018

    Posted: Apr 24th, 2017

    The London Marathon is the premier running event in the world, with over 40000 people competing against themselves amidst some of the most recognisable landmarks on the planet.   we'll get a gallery of our 2017 entrants in here...
  • Annual Volunteers Conference 2017

    Annual Volunteers Conference 2017

    Posted: Apr 5th, 2017

    We look forward to welcoming our Volunteers and guests who are attending our 2017 conference in Edinburgh this weekend.  
  • Webinars are go!

    Webinars are go!

    Posted: Mar 15th, 2017

    Our series of Webinars are underway, but it isn't too late to join in. Previous webinar recordings are available in the videos page of our Members' section   Friday 17th March, 3pm GMT: Relaxation Techniques This webinar is exactly...
  • Obeticholic acid approved by NICE for the treatment of patients with PBC

    Obeticholic acid approved by NICE for the treatment of patients with PBC

    Posted: Mar 2nd, 2017

    First new medication for Primary Biliary Cholangitis in nearly 20 years   The PBC Foundation today welcomes the news that the first new treatment for 20 years has become available for patients with PBC. Affecting 22,000 patients...
  • Rare Disease Day 2017

    Rare Disease Day 2017

    Posted: Feb 28th, 2017

    On Rare Disease Day 2017 we are again reminded of the need to shine a spotlight on disease such as PBC and help the general public gain a better understanding. Despite it being the third most common cause of premature death in the...
  • PBC Webinars

    PBC Webinars

    Posted: Feb 24th, 2017

    The PBC Foundation will be hosting a series of webinars over the next six weeks.  The webinars will be 2 hours in duration and will cover a range of subjects.  If you wish to attend, follow the links below to register your...
  • Glasgow Afternoon Tea

    Glasgow Afternoon Tea

    Posted: Jan 10th, 2017

    You are invited to the PBC Foundation afternoon tea at the Millennium Hotel, George Square, Glasgow, G2 1DS on Sunday 29th January 2017 from 2pm-4pm.  Come and join our CEO Collette Thain,  volunteers and members of the...
  • The power of music

    The power of music

    Posted: Jan 10th, 2017

    In our self-management workshops, we dedicate one session to how music can help you achieve a positive mindset. The sessions themselves go into much greater depth but essentially the principle is that if you are in a state of stress,...
  • Mini Self-Management Sessions in Wales coming soon...

    Posted: Nov 16th, 2016

    Collette and Mhari will be out on the road delivering three mini self-management sessions in Wales, starting off in The County Hotel, Haverfordwest on Wednesday 30th November from 10am to 12pm.     Then later on the same...
  • Survey on itching

    Survey on itching

    Posted: Nov 4th, 2016

    Health Research Associates, Inc. (HRA) is a private company based in Seattle that works in patient-reported outcomes research, mostly helping pharmaceutical companies develop the questionnaires they need for use in clinical trials. HRA...
  • International PBC Day 2016 - Roll of Honour

    International PBC Day 2016 - Roll of Honour

    Posted: Sep 30th, 2016

    Another year and another great PBC Day. Each year it goes from strength to strength as an awareness raising tool. And the activities showed diversity, dedication and, in one notable case, no small amount of daring. Check out our Storify...
  • New research highlights public confusion about liver disease

    New research highlights public confusion about liver disease

    Posted: Sep 8th, 2016

      New research shows 41% of people are unable to locate the liver despite it being the largest internal organ in the body While 94% of adults know that alcohol causes liver disease, more than half are unaware that immune system...
  • International PBC Day 2016

    International PBC Day 2016

    Posted: Sep 5th, 2016

    Sunday 11th September   It is almost time for International PBC Day again and much is being done around the world to raise awareness of PBC and of the virtues of doing 30 minutes of activity per day. See the map...
  • Three Peaks for PBC

    Three Peaks for PBC

    Posted: Aug 10th, 2016

    THREE PEAKS CHALLENGE The PBC Foundation would like to invite you to join them along with Intercept Pharmaceuticals to take part in the “Three Peaks Challenge” with the last peak being on September 11th ( International...
  • PBC Day Afternoon Tea

    PBC Day Afternoon Tea

    Posted: Aug 10th, 2016

      You are invited to join the PBC Foundation for afternoon tea at the Old Waverley Hotel, 43 Princes Street, Edinburgh EH2 2BY on Sunday 11th September 2016 from 2pm-5pm. Come and join our volunteers and members of the PBC community...
  • Your chance to be heard : research participants needed

    Your chance to be heard : research participants needed

    Posted: Aug 1st, 2016

    Your opportunity to take part in a study to research the patient experience of living with Primary Biliary Cholangitis (formerly known as Primary Biliary Cirrhosis). Download a larger copy of the study advert here: Patient recruitment...
  • Peebles coffee morning raises £600 for PBC Foundation

    Peebles coffee morning raises £600 for PBC Foundation

    Posted: Jul 15th, 2016

    On Saturday, 9th July our Regional Volunteer for the Scottish Borders, Ena, hosted a coffee morning in the scenic town of Peebles in aid of the PBC Foundation.  The morning was very well attended, and all the team were kept on...
  • General News update: 8th July 2016

    General News update: 8th July 2016

    Posted: Jul 8th, 2016

    Hello everyone.  You will have received your Spring 2016 edition of The Bear Facts and hopefully read it all by now? Hopefully you will have seen that The PBC Foundation is celebrating its 20th birthday this year.  This is...
  • It's your time

    It's your time

    Posted: Jul 6th, 2016

    There have been many key developments for people with PBC over the years. Alongside the name change, there is a growing awareness of PBC in the medical and wider community. We are not claiming credit for this, but instead the collective...
  • General Update: 27th June 2016

    General Update: 27th June 2016

    Posted: Jun 27th, 2016

    Hello all.  A wee update from myself on my training progress for International PBC Day. You will all be aware of our 20th Anniversary this year and to mark this we have a few events taking place. Firstly, we have International...
  • Belly dancing in the Black Country

    Belly dancing in the Black Country

    Posted: Jun 14th, 2016

    New Year; a time of resolutions to be more active, to take up a new form of activity to improve health and lose a few festively induced pounds. While many people pound the pavements on bleak winter days to get their dose of exercise,...
  • Great North Run Places Available

    Great North Run Places Available

    Posted: Jun 14th, 2016

    Should you wish to take on one of the friendliest, most popular challenges in the UK, we have five spaces available in the Great North Run this year. The event, which takes place in Newcastle/Gateshead on the 11th September this year,...
  • Self Management Workshop | Morpeth | 12th May 2016

    Posted: May 6th, 2016

    We are hosting a self-management development session in Morpeth on Wednesday 11th May 2016.  The session will be from 9.30 till 3.30.  Friends and family are welcome, but we need you to confirm attendance so we can cater...
  • Self Management Workshop | Durham | 11th May 2016

    Posted: May 6th, 2016

    We are hosting a self-management development session in Durham on Wednesday 11th May 2016.  The session will be from 9.30 till 3.30.  Friends and family are welcome, but we need you to confirm attendance so we can cater for...
  • Self Management Workshop | Darlington | 9th May 2016

    Posted: May 6th, 2016

    We are hosting a self-management development session in Darlington on Monday 9th May 2016.  The session will be from 9.30 till 3.30.  Friends and family are welcome, but we need you to confirm attendance so we can cater for...
  • Self Management Workshop | Bedford | 19th May 2016

    Posted: May 6th, 2016

    We are hosting a self-management development session in Bedford on Wednesday 19th May 2016.  The session will be from 9.30 till 3.30.  Friends and family are welcome, but we need you to confirm attendance so we can cater...
  • Self Management Workshop | Dumfries | 10th May 2016

    Self Management Workshop | Dumfries | 10th May 2016

    Posted: Apr 29th, 2016

    We are hosting self-management development sessions in Dumfries on Tuesday 10th May 2016.  The session will be from 9.30 till 3.30.  Friends and family are welcome, but we need you to confirm attendance so we can cater for...
  • Self Management Workshop | Carlisle | 9th May 2016

    Self Management Workshop | Carlisle | 9th May 2016

    Posted: Apr 29th, 2016

    We are hosting self-management development sessions in Carlisle on Monday 9th May 2016.  The session will be from 9.30 till 3.30.  Friends and family are welcome, but we need you to confirm attendance so we can cater for...
  • Self Management Workshop | Ayr | 11th May 2016

    Self Management Workshop | Ayr | 11th May 2016

    Posted: Apr 29th, 2016

      We are hosting self-management development sessions in Ayr on Wednesday 11th May 2016.  The session will be from 9.30 till 3.30.  Friends and family are welcome, but we need you to confirm attendance so we can cater...
  • London Conference 2016

    London Conference 2016

    Posted: Apr 29th, 2016

    Saturday 21 May 2016    The PBC Foundation is holding a conference in London, hosted by the Royal Free Hospital, on Sat 21st March Itinerary 11.00am         Registration 11.15am        ...
  • Meeting in Birmingham | April 5th, 2016

    Meeting in Birmingham | April 5th, 2016

    Posted: Apr 1st, 2016

      On Tuesday 5th April our volunteer, Diane, is holding a meeting in Birmingham. So if you live nearby or happen to be in the area, do pop along.  PBC Foundation Meeting in Birmingham Diane (Regional Volunteer...
  • Meetings in London and Chester | 19th March 2016

    Meetings in London and Chester | 19th March 2016

    Posted: Mar 14th, 2016

    On Saturday 19th two of our volunteers are holding meetings in their local areas. So if you live nearby or happen to be in the area, do pop along.  PBC Foundation Meeting in London Goksel (Regional Volunteer for...
  • International Women's Day

    International Women's Day

    Posted: Mar 8th, 2016

      Today is International Women's Day. You probably already know this as every single organisation and public figure will have mentioned it. We are no different in that respect but what do we have to say that is so appropriate...
  • Esther's Story

    Esther's Story

    Posted: Feb 29th, 2016

    Esther is the regional volunteer for the Edinburgh area. On Rare Disease Day, take a few minutes to hear her story, from first learning of the disease on diagnosis, through spending time in hospital, to taking control of her own health...
  • Patient Power  |  Rare Disease Day 2016

    Patient Power | Rare Disease Day 2016

    Posted: Feb 29th, 2016

    Although most people may associate 29th February as being that rare day when women traditionally propose marriage to men, the date this year marks something far more meaningful for many of us, though it’s equally as ‘rare’....
  • Meetings in Middlesbrough and Colwyn Bay | 27th February 2016

    Meetings in Middlesbrough and Colwyn Bay | 27th February 2016

    Posted: Feb 23rd, 2016

    On Saturday 27th two of our volunteers are holding meetings in their local areas. So if you live nearby or happen to be in the area, do pop along.  PBC Foundation Meeting in Middlesbrough Lynn Robson (Regional Volunteer for Cleveland)...
  • Meeting in Pembrokeshire | February 13th 2016

    Meeting in Pembrokeshire | February 13th 2016

    Posted: Feb 3rd, 2016

    Our Volunteer Jacqueline Aitken is hosting a meeting in Dyfed for our service users on Saturday 13th February 2016 from 2pm-4pm at the following venue:- CAFÉ RIO 19-21 QUAY STREET HAVERFORD WEST DYFED SA61 1BG These meetings...
  • Volunteer Opportunity | Edinburgh Office | Fundraising

    Volunteer Opportunity | Edinburgh Office | Fundraising

    Posted: Jan 14th, 2016

    The PBC Foundation is a small organisation in terms of staff and turnover, yet we have a global demand for our information and services. Currently the bulk of the fundraising responsibility sits with one member of staff. We are offering...
  • Self Management Workshop | St Andrews, Scotland

    Self Management Workshop | St Andrews, Scotland

    Posted: Jan 11th, 2016

    Self Management Workshop  |  St Andrews, Scotland  |  26th January 2016 We are hosting a self-management development session in St Andrews on Tuesday 26th January 2016.  The session will be from 9.30am-3.30pm. ...
  • Outward Bound

    Outward Bound

    Posted: Dec 18th, 2015

    Outward Bound Loch Eil 9th – 11th October 2015-10-22 The Foundation was delighted to pilot the first ever Outward Bound weekend for the children, grandchildren, nieces and nephews of our registered service users. The Loch Eil...