User:Jrfw51/development1
The PBC Foundation is a UK-based international charity offering support and information to people with PBC, their families and friends.[1] PBC originally stood for primary biliary cirrhosis, but now, after the name change initiative driven by this group, has been renamed primary biliary cholangitis. PBC is an auto-immune disease of the liver, more common in women, which can cause fatigue, itching and, often after many years, jaundice or more severe liver disease, sometimes requiring liver transplantation.[2][3]
Activities[edit]
Support[edit]
The PBC foundation is the only organisation in the UK dedicated to PBC and has members in over 65 countries. It runs a helpline, publishes a compendium about PBC (Living with PBC) and a quarterly newsletter (The Bear Facts).[4] It runs members' meetings, self-management sessions,and hosts conferences as well as having a UK-wide volunteer network.
Research[edit]
It gives funds to support related medical research projects.[1] Among these initiatives, the Foundation and its members were involved in the development of the PBC-40 quality of life measure published in 2004.[5] It helped establish the PBC Genetics Study and encouraged members to contribute samples to the large genome wide association study which defined new genetic factors associated with PBC and was published in 2007 and 2012.[6][7]
Campaigns[edit]
Recognition of PBC[edit]
It campaigns for increasing recognition of the disorder, improved diagnosis and treatments. It estimates over 8000 people are undiagnosed in the UK.[8]
Name change initiative[edit]
The PBC Foundation was key to the initiative to change the name of the disease from "primary biliary cirrhosis" to "primary biliary cholangitis".[9] Justification for this name change came from the awareness that most patients with PBC do not have cirrhosis: either at the time of diagnosis or as the condition progresses. Concerns were expressed that "cirrhosis" is often seen to be a result of alcohol or drugs rather than an auto-immune disorder.
The initiative started in the spring of 2014. At two international meetings, members and experts addressed the need for name change and strong support came from the American organisation, PBCers.[10] A global survey was conducted, with over 1100 respondents from PBC patients and healthcare providers. The results of the survey were overwhelmingly in favour of a name change, with support for using "primary biliary cholangitis", as this preserved the PBC initials.[11]
International professional liver disease associations including the American Association for the Study of Liver Diseases and the European Association for the Study of the Liver have supported this initiative and have now endorsed the change.[12]
History[edit]
Founded in 1996, it has gained members from patients, family members, friends of PBC people, and from health professionals. The CEO and founder, Collette Thain, was awarded an MBE in 2004 which she accepted on behalf of those suffering from PBC, and described the work of the Foundation.[13][14]
References[edit]
- ^ a b Association of Medical Research Charities. "The PBC Foundation". Retrieved 12 July 2015.
- ^ NHS Choices. "Primary Biliary Cirrhosis". Retrieved 12 July 2015.
- ^ PBC Foundation. "What is PBC?". Retrieved 11 July 2015.
- ^ PBC Foundation. "About us". Retrieved 11 July 2015.
- ^ Jacoby A, Rannard A, Buck D, Bhala N, Newton JL, James OF; et al. (2005). "Development, validation, and evaluation of the PBC-40, a disease specific health related quality of life measure for primary biliary cirrhosis". Gut. 54 (11): 1622–9. doi:10.1136/gut.2005.065862. PMC 1774759. PMID 15961522.
{{cite journal}}: Explicit use of et al. in:|author=(help)CS1 maint: multiple names: authors list (link) - ^ "Genome-wide association study identifies 12 new susceptibility loci for primary biliary cirrhosis". Nature Genetics. 43 (4): 329–32. 2011. doi:10.1038/ng.789. PMC 3071550. PMID 21399635.
{{cite journal}}: Cite uses deprecated parameter|authors=(help) - ^ "Dense fine-mapping study identifies new susceptibility loci for primary biliary cirrhosis". Nature Genetics. 44 (10): 1137–41. 2012. doi:10.1038/ng.2395. PMC 3459817. PMID 22961000.
{{cite journal}}: Cite uses deprecated parameter|authors=(help) - ^ At home magazine. "Primary biliary cirrhosis: getting a diagnosis". Retrieved 12 July 2015.
- ^ PBC Foundation. "PBC Name Change Press Release". Retrieved 8 July 2015.
- ^ PBCers Organization. "Primary Biliary Cirrhosis Name Change Initiative" (PDF).
- ^ PBC Foundation. "EASL Name Change Presentation". Retrieved 8 July 2015.
- ^ American Association for the Study of Liver Disease. "A name change for PBC: cholangitis replacing cirrhosis". Retrieved 6 July 2015.
- ^ BBC Radio 4 Women's Hour. "Health Archive". Retrieved 12 July 2015.
{{cite web}}: CS1 maint: numeric names: authors list (link) - ^ The Scotsman (3 January 2008). "Dealing with a silent killer". Retrieved 8 July 2015.