The day someone is diagnosed with Primary Biliary Cholangitis, you are often scared, confused, overwhelmed, and likely feeling quite alone. This is where your journey with PBC begins.
You will have many questions and receive a great deal of advice, some good and some which may or may not be applicable to your specific health situation.
There are fantastic resources for support for PBC patients. PBCers Organization (http://pbcers.org) is the largest support group in the United States for PBC patients. PBC Society (http://pbc-society.ca) is based in Canada and the PBC Foundation (https://www.pbcfoundation.org.uk) is based in the UK. Other countries have started their own support networks as well.
There are also more global resources such as the American Liver Foundation’s Inspire site (https://www.inspire.com) and pharmaceutical company sites for PBC patients such as the patient portal by Intercept Pharmaceuticals (https://interceptpharma.com/patient-resources/ ).
Wherever you choose to gain your support for this disease, our advocacy efforts continue to represent all PBC patients in the funding for research, education of medical care providers on patient impact of this disease, PBC as a women’s health issue, and continued strengthening of the PBC community. We also focus on the general public’s awareness that PBC is not a lifestyle disease, meaning it is not caused by something we do (alcohol abuse, IV drug use, unprotected sex) but in fact is an autoimmune disease that attacks specific cells in our liver.
Primary Biliary cholangitis
(Previously known as Primary Biliary Cirrhosis)
What is Primary Biliary Cholangitis? What are the symptoms? What treatments are available? How can I live well with this disease? Visit the Knowledge Page for answers.
PBC is a lot of things.
It is a Rare Disease
It is an Autoimmune Disease
It is a Chronic Disease
It Is a Progressive Disease
It does not define you as a patient or a person.
Learn about advocacy efforts for this rare chronic autoimmune liver disease known as PBC. Follow our progress on social media as well.
Advocacy in PBC
Primary Biliary Cholangitis (formerly known as Primary Biliary Cirrhosis) or PBC, is a rare autoimmune disease.
There are over 7,000 rare diseases and over 100 liver diseases. With the majority of attention in the liver community focused on Hepatitis B and C, PBC is often over looked by researchers, as well as pharmaceutical companies because it is a small population of patients.
Government research funds are rarely allocated to PBC and advocacy allows our voice to be heard among all the din of fund seeking for research of disease.
While it is still a strong impact on health, particularly for women (90% of PBC patients are female), this issue is overlooked on the Women’s Health front as well.
With effective advocacy, the awareness of PBC is rising and research is looking into more options for treatment and eventually a cure.
What is on the horizon for PBC patients? See the latest research studies and presentations from the clinicians and researchers working to find better treatments and a cure for PBC.
Navigating PBC Advocacy
WHO I AM
PBC Advocate was founded by a PBC patient with a passion for advocacy in the patient community. PBC Advocate is committed to being the voice for those who need treatments, education, support and a cure.
WHAT I DO
Our mission is to ensure each PBC patient has access to the knowledge, support, inspiration and resources to live with PBC in a way that does not define you.
IN THE NEWS
PBC Advocate, Cathy Mumford, is active in many arenas of PBC patient advocacy. For the latest news on this activity, visit the NEWS page.
In 2007, the founder of PBCAdvocate.org Cathy Mumford, was diagnosed with what was then known as Primary Biliary Cirrhosis. She immediately became a passionate patient advocate as she learned everything she could about this rare chronic autoimmune liver disease.
Cathy has spoken at events, participated in advocacy days with US Representatives and Senators to seek funding for PBC research, supported individuals both newly diagnosed and “old timers” and continues to be a voice for patients.
As a member of the American Liver Foundation’s National Patient Advisory Committee (NPAC) for PBC Cathy continues her advocacy through this well respected organization. Cathy is also a member of the largest support group for PBC patients in the US, PBCers Organization. She focuses on advocacy, conferences, and research and serves on the Executive Committee. Cathy is also a Wego Health Expert as well a member of the Breakthrough Crew (a patient advocacy group started by Clara Health supporting clinical trials for patients)