Editing Primary biliary cholangitis (section)

==Society and culture==

===Support groups===

====PBC Foundation====
The PBC Foundation is a UK-based international charity offering support and information to people with PBC and their families and friends.<ref name="AMRC">{{cite web|last1=Association of Medical Research Charities|title=The PBC Foundation|url=http://www.amrc.org.uk/our-members/member-directory/the-pbc-foundation|access-date=12 July 2015|archive-url=https://web.archive.org/web/20160304225259/http://www.amrc.org.uk/our-members/member-directory/the-pbc-foundation|archive-date=4 March 2016|url-status=dead}}</ref>  It campaigns for increasing recognition of the disorder, improved diagnosis, and treatments, and estimates over 8,000 people are undiagnosed in the UK.<ref name=Scotsman2008/><ref>{{cite journal | vauthors = Thain C | journal = At Home Magazine | format = online | year = 2015 | title = Primary Biliary Cirrhosis: Getting a Diagnosis | url = http://www.athomemagazine.co.uk/primary-biliary-cirrhosis-getting-a-diagnosis/ | access-date = 28 July 2015 | archive-date = 13 July 2015 | archive-url = https://web.archive.org/web/20150713032239/http://www.athomemagazine.co.uk/primary-biliary-cirrhosis-getting-a-diagnosis/ | url-status = dead }}</ref>  The Foundation has supported research into PBC including the development of the PBC-40 [[quality of life]] measure published in 2004<ref name="pmid15961522">{{cite journal | vauthors = Jacoby A, Rannard A, Buck D, Bhala N, Newton JL, James OF, Jones DE | title =  Development, Validation, and Evaluation of the PBC-40, a Disease Specific Health-Related Quality of Life Measure for Primary Biliary Cirrhosis | journal = Gut | volume = 54 | issue = 11 | pages = 1622–1629 | date = November 2005 | pmid = 15961522 | pmc = 1774759 | doi = 10.1136/gut.2005.065862 }}</ref> and helped establish the PBC Genetics Study.<ref name = "Liu_2012"/><ref>{{cite journal | vauthors = Mells GF, Floyd JA, Morley KI, Cordell HJ, Franklin CS, Shin SY, Heneghan MA, Neuberger JM, Donaldson PT, Day DB, Ducker SJ, Muriithi AW, Wheater EF, Hammond CJ, Dawwas MF, Jones DE, Peltonen L, Alexander GJ, Sandford RN, Anderson CA | display-authors = 6 | title = Genome-Wide Association study Identifies 12 New Susceptibility Loci for Primary Biliary Cirrhosis | journal = Nature Genetics | volume = 43 | issue = 4 | pages = 329–332 | date = March 2011 | pmid = 21399635 | pmc = 3071550 | doi = 10.1038/ng.789 }}</ref> It was founded by Collette Thain in 1996, after she was diagnosed with the condition.<ref name=Scotsman2008>{{cite web | author = Staff | work = The Scotsman | date = 3 January 2008 | url =  http://www.scotsman.com/news/health/dealing-with-a-silent-killer-1-1239548 | title = Dealing with a silent killer }}</ref>  Thain was awarded an MBE [[Order of the British Empire]] in 2004 for her work with the Foundation.<ref>{{cite web | vauthors = Gordon B | work = The Scotsman | date = 31 December 2003 | url = http://www.scotsman.com/news/a-royal-seal-of-approval-1-898754 | title = A royal seal of approval }}</ref>  The PBC Foundation helped initiate the name change campaign in 2014.<ref name="PBCFname"/><ref name="pbcers.org"/><ref name="EASL Name Change Presentation">{{cite web|last1=PBC Foundation|title=EASL Name Change Presentation|url=http://www.pbcfoundation.org.uk/Home/BlogItem/12|access-date=8 July 2015|archive-url=https://web.archive.org/web/20150709010619/http://www.pbcfoundation.org.uk/Home/BlogItem/12|archive-date=9 July 2015|url-status=dead}}</ref>

====PBCers Organization====
The PBCers Organization is a US-based nonprofit patient support group that was founded by Linie Moore in 1996; it advocates for greater awareness of the disease and new treatments.<ref>{{cite web| vauthors = Kim M |title=New hope for PBC liver disease|url=http://abc30.com/health/new-hope-for-pbc-liver-disease/479448/|website=ABC30 Action news|access-date=4 August 2015|date=18 January 2015}}</ref> It supported the name change initiative.<ref name="pbcers.org"/>
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===Name===
In 2014 the PBC Foundation, with the support of the PBCers Organization, the PBC Society (Canada)<ref name="pmid26196152">{{cite journal | vauthors = Cheung AC, Montano-Loza A, Swain M, Vincent C, Renner E, Sherman M, Janssen HL, Mason AL | display-authors = 6 | title = Time to make the change from 'primary biliary cirrhosis' to 'primary biliary cholangitis' | journal = Canadian Journal of Gastroenterology & Hepatology | volume = 29 | issue = 6 | pages = 293 | year = 2015 | pmid = 26196152 | pmc = 4578449 | doi = 10.1155/2015/764684 }}</ref> and other patient groups, advocated a change in name from "primary biliary cirrhosis" to "primary biliary cholangitis," noting that most PBC patients did not have [[cirrhosis]] and that "cirrhosis" often had negative connotations of [[alcoholism]].<ref name="PBCFname"/><ref name="pbcers.org"/><ref name="EASL Name Change Presentation"/>  Patient and professional groups were canvassed.<ref name="pmid26374822"/> Support for the name change came from professional bodies including the [[American Association for the Study of Liver Diseases]]<ref name="AASLD-PBC">{{cite web|last1=AASLD|title=A Name Change for PBC: Cholangitis Replacing Cirrhosis|url=https://www.aasld.org/name-change-pbc-cholangitis-replacing-cirrhosis|access-date=6 July 2015}}</ref> and the [[European Association for the Study of the Liver]].<ref name="pmid26385765"/>  Advocates for the name change published calls to adopt the new name in multiple hepatology journals in the fall of 2015.<ref name="pmid26374822">{{cite journal | vauthors = Beuers U, Gershwin ME, Gish RG, Invernizzi P, Jones DE, Lindor K, Ma X, Mackay IR, Parés A, Tanaka A, Vierling JM, Poupon R | display-authors = 6 | title = Changing nomenclature for PBC: from 'cirrhosis' to 'cholangitis' | journal = Gut | volume = 64 | issue = 11 | pages = 1671–1672 | date = November 2015 | pmid = 26374822 | doi = 10.1136/gutjnl-2015-310593 | doi-access = free }}</ref><ref name="pmid26385765">{{cite journal | vauthors = Beuers U, Gershwin ME, Gish RG, Invernizzi P, Jones DE, Lindor K, Ma X, Mackay IR, Parés A, Tanaka A, Vierling JM, Poupon R | display-authors = 6 | title = Changing nomenclature for PBC: From 'cirrhosis' to 'cholangitis' | journal = Journal of Hepatology | volume = 63 | issue = 5 | pages = 1285–1287 | date = November 2015 | pmid = 26385765 | doi = 10.1016/j.jhep.2015.06.031 | doi-access = free }}</ref><ref name="pmid26372460">{{cite journal | vauthors = Beuers U, Gershwin ME, Gish RG, Invernizzi P, Jones DE, Lindor K, Ma X, Mackay IR, Parés A, Tanaka A, Vierling JM, Poupon R | display-authors = 6 | title = Changing nomenclature for PBC: From 'cirrhosis' to 'cholangitis' | journal = Hepatology | volume = 62 | issue = 5 | pages = 1620–1622 | date = November 2015 | pmid = 26372460 | doi = 10.1002/hep.28140 | s2cid = 45700644 }}</ref><ref name="pmid26385706">{{cite journal | vauthors = Beuers U, Gershwin ME, Gish RG, Invernizzi P, Jones DE, Lindor K, Ma X, Mackay IR, Parés A, Tanaka A, Vierling JM, Poupon R | display-authors = 6 | title = Changing nomenclature for PBC: from 'cirrhosis' to 'cholangitis' | journal = Gastroenterology | volume = 149 | issue = 6 | pages = 1627–1629 | date = November 2015 | pmid = 26385706 | doi = 10.1053/j.gastro.2015.08.031 | doi-access = free }}</ref>
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