Organizations plan activities, events for PBC Awareness Month
Walks, educational programs, conferences will aim to raise awareness
September will be a busy month for the primary biliary cholangitis (PBC) community as organizations advocate for better patient care through conferences, walks, and other activities marking PBC Awareness Month.
Cholangitis is a liver condition characterized by inflammation in the bile ducts, which carry a digestive fluid called bile between the liver and the intestines. When there isn’t any clear cause for the inflammation, it’s classified as primary. PBC is a rare form of cholangitis that slowly destroys the bile ducts inside the liver. It occurs more often in women than men and is usually diagnosed in patients between the ages of 30 and 60.
Advocacy groups aim to raise awareness and educate people about the disease throughout the month and on PBC Awareness Day, the second Sunday in September. This year, it falls on Sept. 8.
Patient voices, research updates
The PBCers Organization and the Canadian PBC Society invite patients in the U.S. and Canada to spread the word about PBC to their friends and families. This year’s theme, PBC Voices, aims to use patient experiences to spur interest in learning more about the disease. The organizations are sponsoring a cross-border lunch on Sept. 8 in Niagara Falls, Ontario. Tickets are free, but registration is required.
On Sept. 10, the American Liver Foundation (ALF) and the Canadian Liver Foundation will hold a virtual presentation, Understanding Cholangitis: PBC and PSC, featuring guidance and education about the causes, symptoms, and diagnoses of PBC and primary sclerosing cholangitis (PSC), as well as updates on research and treatment options.
ALF’s signature Liver Life Walk events will take place across the U.S. in September, October, and November. The walks are opportunities for “people affected by liver disease to come together to raise awareness and funds,” according to the event website.
Walks will be held in Michigan on Sept. 14, in Colorado on Sept. 21, and in Connecticut on Sept. 28. Other locations will also have walks, and there’s a virtual option planned for Oct. 1. ALF said funds raised from the events will allow it to continue providing resources to liver patients and their families.
The Pittsburgh, PA-based Community Liver Alliance, which works with community leaders, interest groups, and policymakers on liver disease-related issues, will hold a virtual event, PBC Liver Journal Club, on Sept. 24. Healthcare professionals, including hepatologists, gastroenterologists, and primary care physicians, will talk about recent research papers and advances in the field of liver health.
In the U.K., the PBC Foundation is holding its PBC Patient Conference Sept. 7-8. The conference, which can be attended in person or virtually, will feature sessions on topics including self care, physiotherapy, pregnancy, transplants, and managing daily living.
The PBC Foundation hosted an international summit over the summer that “started with a series of what-if conversations” and resulted in the conclusion that “we just need to provide better care” to PBC patients, Robert Mitchell-Thain, CEO of the foundation, said in a phone interview with Liver Disease News. Under the Provide Better Care slogan, the organization will launch Project 90/90, a plan to provide 90% of patients with 90% of the care under current PBC care guidelines, he said.
“What we’re looking at is personalized medicine,” making sure “patients are empowered” to ask the right questions of their doctors, Mitchell-Thain said.
About the Author
