If you know about Liver Disease – Hepatitis, MASLD/MASH, ALD, PBC – it’s likely because of what we call here at LiverRight “The Tremendous Twenty.”
There are 20 passionate, proud & powerful ADVOCACY organizations in the USA and around the world that have shone a bright hot light on a Wildly Ignored Organ: The Liver.
Every Thursday, we spotlight one of the bold pioneers,
and you can watch the total list unfold here–
THE 20 ADVOCACY ICONS IN LIVER DISEASE
- The PBC Foundation
Next Week: Hepatitis B Foundation
[and 18 more Advocacy Icons in Liver Disease to come]
ADVOCACY ICON: The PBC Foundation
FOUNDED IN: 1996
HQ IN: Edinburgh, Scotland
KEY ADVOCATOR: Robert Mitchell-Thain
DESCRIBED: The PBC Foundation is the largest PBC patient support organisation in the world. Our purpose is to have a positive impact on the quality of life of every person affected by PBC.
FOCUS AREA: PBC, or Primary Biliary Cholangitis, is a chronic autoimmune liver disease that affects the bile ducts in the liver.
It’s an autoimmune condition, which means that the body’s immune system mistakenly attacks healthy tissue. In PBC, the immune system targets the bile ducts, causing inflammation and damage. The exact cause of PBC is unknown, but it may be related to genetic or environmental factors.
QUOTED (from https://www.ipsen.com/rare-diseases/partnering-for-progress-the-importance-of-collaboration-in-primary-biliary-cholangitis-pbc-awareness/):
“For those living with PBC, every day presents challenges, and we must use the month of September to not only raise awareness but also educate others about what living with PBC truly means. Patient organizations play a fundamental role in this mission, offering more than just information – they provide a lifeline, a sense of community, and a bridge between patients and healthcare providers.
Robert Mitchell-Thain shared his story on how he got involved with PBC after his mother was diagnosed with the condition 30 years ago. At this time, she was given five years to live, yet thirty years later, she’s still alive and well: “I got involved because I saw her story and I wanted to really try and fight as best I could to make sure that as many patients as possible with PBC have access to the information and the support when, how, and where they need it”. The PBC Foundation has made a significant impact on the PBC community by offering resources, raising awareness, and advocating for better care and treatment options.
Collaboration is key to driving progress in PBC care. At Ipsen, we believe in the power of working together with patient organizations, clinicians, researchers, and industry partners. This collaborative approach allows us to gather data, share knowledge, and develop treatments that truly address the needs of patients. We work closely with the PBC Foundation and other partners to ensure that our efforts are aligned with the needs of the PBC community. As Robert Mitchell-Thain states, “We work really hard with patients, clinicians, academics, and industry partners to bring together all the knowledge that is out there about PBC.” This kind of partnership is what drives meaningful change. By pooling our resources and expertise, we can ensure that our efforts are focused on improving the lives of those living with PBC. “
HOW TO GET INVOLVED WITH THE PBC FOUNDATION: https://www.pbcfoundation.org.uk/get-involved/