International PBC Day - Sunday 13th September 2020
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International PBC Day - Sunday 13th September 2020

International PBC Day - Sunday 13th September 2020

International PBC Day is almost upon us and we are so excited to be sharing our plans to you.  With Covid-19 affecting all of us, and curtailing our physical activities, we have a multi-pronged approach to PBC Day in the hope that as many of you as possible will join us in our PBC Day initiatives.

First off, we will be sharing with you our International PBC Day logos on social media. If you would like one in your own language, contact us and we shall organise that for you. We already have Spanish, French, Portuguese, Swedish, Danish, Hebrew and Japanese to begin with and we will be sharing them from 1st September.

Secondly, we will be joining the Edinburgh Kilt Walk initiative. You can walk anywhere in the world: even just around your kitchen if you want!  You can also raise funds for the PBC Foundation whilst doing your walk. The great news is Kilt Walk will add an extra 50% to your total if you sign up with them. Details on that can be found in a separate article.

The third part of PBC Day is an entire day of webinars looking at all aspects of PBC around the world.

We shall begin in Australia then finish up on the Pacific coast of the USA. The webinars will all be live, with a presentation then Q&A session, lasting just under an hour.  The technology we use allows for live translation of written comments so you can read in your own language and ask questions in your own language. If you miss a live session, worry not!! We shall record each webinar and share it with you via links from our website, so do make sure you have registered with us. (If you receive the Bear Facts or use our App, then you are already registered with us)

If you have not registered with us, you can do so for free  here.

So far the programme looks like this:

The day will start 01.00 in the morning in the UK, with Prof Martin Weltman presenting at 08.00- 10.00am local time about PBC in Australia: looking at PBC diagnosis, treatments, and care pathways in Australia.  This will be Australia-specific.


https://pbcfoundation.clickmeeting.com/australia
Event ID: 599-768-364
Participant PIN 692463675#

We will then go through Asia, with countries coming on board to fill the gaps. The next current webinar will be in Taiwan presented by Prof Ming-Ling Chang at 06.00 UK time, 13.00 in Taiwan.

https://pbcfoundation.clickmeeting.com/taiwan
Event ID: 144-985-357
Participant PIN 792266976#

Therafter, we will have Japan joining us at 07.00 UK time, (3pm in Japan), with Prof Atsushi Tanaka presenting in Japanese to patients in Japan.

https://pbcfoundation.clickmeeting.com/japan
Event ID: 788-486-214
Participant PIN 414321181#

From there we move to Italy with Prof Pietro Invernizzi, who will discuss in Italian the same topics for patients and families in Italy. This will be at 08.00 in UK, 09.00 in Italy.

https://pbcfoundation.clickmeeting.com/italy
Event ID: 885-246-323
Participant PIN 637837757#

Once we get to 09.00 UK time, we open up to more general PBC webinars which are designed for everyone around the world. These presentations will be in English, albeit with the written translation service should English not be your first language. Dr Marco Carbone will discuss with you PBC Care as influenced by Covid-19, and how we can move forward as a community.

https://pbcfoundation.clickmeeting.com/pbcpostcovid-19
Event ID: 166-823-621
Participant PIN 729898772#

At 10.00 UK time, we have a psychotherapist presenting about resilience, self-care, and managing anxiety and stress.  Self-management is so important so we are delighted to have Angie Cameron, from www.direction.org to speak with us and to answer your questions.

https://pbcfoundation.clickmeeting.com/resiliance
Event ID: 134-389-141
Participant PIN 143896138#

At 11.00 UK time, Prof Ulrich Beuers from Netherlands will present about medications in PBC, how they work and their different mechanisms.

https://pbcfoundation.clickmeeting.com/how-treatments-work
Event ID: 763-352-856
Participant PIN 561887277#

AT 12.00, we come to the UK for the first time with Prof Dave Jones OBE discussing PBC and fatigue.  Prof Jones will be a familiar face to many of you who have been watching our recent webinars during Covid-19.

https://pbcfoundation.clickmeeting.com/pbc-and-fatigue
Event ID: 481-483-676
Participant PIN 322476939#

13.00 UK time takes us back to another webinar that is country-specific, this time the country being Israel. This will be presented in Hebrew, with live written translation available.

https://pbcfoundation.clickmeeting.com/israel
Event ID: 555-547-136
Participant PIN 785515251#

From Israel, we then go to Canada to join Prof Gideon Hirschfield, with whom we have worked for many years, who will discuss with us PBC treatments in the real world. He will show us results from the different medications usd in PBC around the world.

https://pbcfoundation.clickmeeting.com/treatments-in-the-real-world
Event ID: 689-119-579
Participant PIN 177494593#

We then come back to the UK for 15.00 when Dr Vinod Hegade will present on the subject of Itch. Dr Hegade has published often on itch and has been a firm favourite at our Volunteers' conference.

https://pbcfoundation.clickmeeting.com/pbc-and-itch
Event ID: 585-119-364
Participant PIN 246713339#

After looking at itch, we then go on to explore the patient-clinician partnership, looking at how we can help ourselves in our interactions with clinicians, which questions to ask, and how to self-advocate. Dr Andrew Yeoman, another frequent partner of the Foundation will cover this for you at 16.00 UK time. Remember, anyone around the world can join any session.

https://pbcfoundation.clickmeeting.com/patient-clinician-partnership
Event ID: 615-659-445
Participant PIN 916781813#

At 17.00 we then start to look at PBC and pregnancy, with the option if we have time to look at sexual dysfunction within PBC also.  Professor Michael Heneghan has presented on this at many conferences, bringing a sensitivity to a difficult topic. You can find this webinar here:

https://pbcfoundation.clickmeeting.com/pbc-and-pregnancy
Event ID: 328-621-827
Participant PIN 266584211#

Some of you may be familiar of the concept of the "Seventh Innings Stretch", which is used during a long baseball game to get people moving and to get the blood circulating again.  Roma Ferguson, an experienced fitness teacher and coach, takes us through some gentle movements, with more energetic options, to remind us that movement is medicine!!

https://pbcfoundation.clickmeeting.com/movement-is-medicine
Event ID: 443-822-871
Participant PIN 321453111#

The next topic we shall cover, at 19.00 UK time, will be with Prof James Neuberger, who is Chair of our Medical Advisory Board, and someone who has regularly featured in our Q&A webinars every Thursday during Covid-19 era. Prof Neuberger will be covering PBC and liver transplantation.

https://pbcfoundation.clickmeeting.com/liver-transplantation
Event ID: 126-279-312
Participant PIN 924351394#

Another of our Trustees finishes the UK segment of presentations at 20.00 UK time. Dr George Mells discusses PBC and genetics, which is a topic that rears many questions for those who regularly contact us. As with all the sessions, there will be an opportunity to ask your questions here:

https://pbcfoundation.clickmeeting.com/pbc-and-genetics
Event ID: 286-511-137
Participant PIN 341911313#

We then travel back across the Atlantic ocean to USA for our final three presentations. at 21.00 UK time, we have Dr Eric Gershwin, who has many many years of experience in PBC, discussing PBC in the world: where are the clusters, what do we know about the numbes, etc.  This will be a fascinating session.

https://pbcfoundation.clickmeeting.com/pbc-around-the-world
Event ID: 643-131-699
Participant PIN 889654857#

The next amazing speaker we have lined up for you is Dr John Vierling who, at 22.00 UK time, will take us through the basics of PBC: how it manifests itself, and general information about PBC itself in the human body.

https://pbcfoundation.clickmeeting.com/what-is-pbc
Event ID: 167-971-226
Participant PIN 959315865#

The last session of the day, taking us from 23.00 all the way through to our midnight finish in the UK (still only 3pm to 7pm in the US) will take a detailed look at the AASLD Guidance Lay Version with Dr Robert Gish.  Dr Gish co-authored the piece with the Foundation in 2019 and it has become a useful tool to help patients in  USA self-advocate for better care.

https://pbcfoundation.clickmeeting.com/aasld-guidance-document-for-pbc
Event ID: 115-822-329
Participant PIN 637477562#

And that will bring our PBC Day patient webinar extravaganza to its close. So far, we have 19 interactive opportunities to learn about PBC in your own language.  You will be able to ask questions. You can watch and share on facebook. You can even come back to the recordings via our website after the day.

We don't expect you to watch every single one all at once, but drop in and out as you see fit, considering your current priorities. And bring your questions!! We'll be ready, we promise.