The PBC Foundation, the Edinburgh-based charity providing worldwide support and advice to people suffering from the incurable progressive liver disease PBC (primary biliary cholangitis); is today celebrating reaching over 40,000 people with its first ever global 24 online event to mark yesterday’s International PBC Day.
PBC sufferers, their families and the medical community joined a series of sessions with world-leading liver disease experts from as far afield as Australia, Japan, Taiwan and the United States. PBC currently affects around 20,000 people in the UK, mainly women; and is a leading cause of liver transplant in adult women.
I’m utterly speechless at how well our first global online event went. To reach over 40,000 people is just incredible and I am so grateful to all the experts around the globe who gave their time to speak to our PBC community about this rare liver condition for which there is still no cure.
Collette comments “These number reflect the amazing online support the PBC Foundation has provided to its service-users on a daily basis around the world since the start of lockdown. Daily online get-togethers have provided a lifeline of support and friendship to our members, many of whom were shielding in isolation”.
World-renowned experts who spoke at the event included: Prof. James Neuberger, (Queen Elizabeth Hospital, Birmingham), Prof. Eric Gershwin (University of California, Davis), Professor Michael Heneghan (Kings College, London); Dr Vinod Hegade (St James Hospital, Leeds);Prof Gideon Hirschfield, from Toronto,Prof Ulrich Beuers, from Netherlands; Prof Martin Weltman (Australia); Prof Ming-Ling Chang (Taiwan); Prof Atsushi Tanaka (Japan); Prof Pietro Invernizzi (Italy), Dr Andrew Yeoman (institution), Dr George Mells (institution) and Dr John Vierling.
Recordings of all the discussions will be available soon for those who were unable to attend on the day.
This initiative developed from an online support initiative where the Foundation broadcast live for 163 consecutive days during lockdown to patients in 29 countries, including patients in the UK whose life has been transformed through the information and support provided.
About PBC Foundation
The PBC Foundation is the only UK organisation exclusively dedicated to providing support and information to those affected by PBC. It currently serves members in over 75 countries around the world.
PBC is (Primary Biliary Cholangitis) is an incurable, life-long, progressive, auto-immune condition which affects the bile ducts and the liver. Currently around 22,000 people, mainly woman are living the condition in the UK. It is the leading cause of liver transplants in adult women.
For more information please get in touch with Collette and Robert:
Collette Thain MBE firstname.lastname@example.org
07714 756057 Founder & patient
Robert Mitchell-Thain email@example.com
07894238413 CEO & Head of Education and Development
Rare Revolution Editor