Latest News
Share this page

Latest News

This latest news is all about the App and your opportunity to get involved!!

 

Latest News

Latest News

Thank you, thank you, thank you.

There are a huge number of you who have already contributed to the App, and you are amazing. Already you have made a huge difference (details below).

For those of you who haven't downloaded the App yet, please do so. There are a huge number of benefits for you:

1) Information including clinical guidelines, FAQs, our compendium "Living with PBC" and a glossary of terms to ensure you have all the information you need.

2) Self-management tools such as test trackers, symptom trackers, weight/dose of Urso trackers, links to helpful information, and interactive tools to help you each and every day.

3) Surveys are there to learn about your experience. The surveys generate collective, anonymised data which tell us what percentage of people are on Urso, on the appropriate dose of Urso, seeing a hepatologist or a gastro, or how many people have certain symptoms.

Already, this data is being shared at important national and international conferences.  As an example, there is now a nationwide UK audit of PBC services to see how many patients do or do not receive the recommended care. This audit will then guide the improvement in patient services. One of the major drivers that convinced clinicians for the need of this audit was a piece sharing the data from the App.

You can download the App from your own app store or you can use these links.

Apple device: https://apps.apple.com/gb/app/pbc-foundation-self-management/id1225705494
Android device: https://play.google.com/store/apps/details?id=uk.org.pbcfoundation.pbcapp1

You can watch our CEO, Collette Thain MBE, introduce the app here: https://youtu.be/DDTe0IoDrVQ

The revolution is coming. And we are the answer.

So please, please, please fill in these surveys, use the app, be the solution: not just for our generation, but for countless others after us.

The answer is out there. We have to ask the right people the right questions. You are the right people! 

  • International PBC Day 2017

    International PBC Day 2017

    Posted: Sep 27th, 2017

    We would like to offer our deepest thanks and appreciation to everyone who gave their time in organising an event in support of International PBC Day 2017. The number of events increased to over 40 in the UK with many more worldwide...
  • BASL Meeting in Coventry

    BASL Meeting in Coventry

    Posted: Sep 22nd, 2017

      Our CEO Collette Thain MBE, attended a meeting of British Association for the Study of the Liver (BASL) at the University of Warwick in Coventry yesterday.  Invited as a guest speaker by Intercept on the subject of Evolving...
  • Statement from the Medical Advisory Committee of PBC Foundation

    Posted: Sep 21st, 2017

    Obeticholic acid (OCA) has recently been licenced in the UK and many other countries around the world for the treatment of people with PBC and is used in those who have not fully responded to or who are intolerant of Ursodeoxycholic...
  • Nursing in Practice (NIP)and Best Practice

    Posted: Sep 19th, 2017

    We will be attending the following Nursing in Practice and Best Practice events where we will have the opportunity to distribute our information to nurses, exhibitors and other attendees to raise further awareness of PBC.  Please...
  • Edinburgh Kiltwalk

    Edinburgh Kiltwalk

    Posted: Sep 19th, 2017

    On Sunday 17th September, the chairman of our board, Adrian Innes and his two colleagues, Thomas and Riley, set off to walk through Edinburgh for the annual and gruelling 26 mile Kilt Walk event.   They successfully completed...
  • PBC Day Event Updates

    Posted: Sep 7th, 2017

    Any updates pertaining to events being held on PBC Day will be posted below; Linlithgow: A Pedal for Scotland event is being held on the same day. This means that road closures affect the the town. Be aware that parking may be limited...
  • Donor Memorial Day : Edinburgh : 9th Sept

    Posted: Sep 1st, 2017

    Liver Transplant Support UK, SC046155, invite you to join them at the Royal Botanic Garden Edinburgh, on Saturday 9th September, to remember our donors by visiting The National Memorial for Organ and Tissue Donors.  Please contact...