PBC Awareness, NFP Brings Chicago Community Together for International PBC Day


PBC Awareness, NFP Brings Chicago Community Together for International PBC Day

Chicago nonprofit creates a space for individuals living with rare autoimmune liver disease to find education, advocacy, support and community

 

Individuals living with Primary Biliary Cholangitis (PBC), along with families, advocates and supporters, came together in Chicago on Sunday, September 13, in recognition of International PBC Day, creating a morning centered on connection, community and greater awareness of a rare autoimmune liver disease that many people have never heard of until receiving a diagnosis.

Hosted by PBC Awareness, NFP, the gathering was part of the organization's recognition of PBC Awareness Month throughout September and its broader mission to improve the lives of individuals and families affected by the disease.

Primary Biliary Cholangitis is a rare, chronic autoimmune disease that affects the bile ducts in the liver. Over time, damage to the bile ducts can lead to liver scarring and serious complications. PBC disproportionately affects women, making education and awareness particularly important for women and communities that may have limited familiarity with the disease.

For L. Marie Asad, Founder and President of PBC Awareness, NFP, the mission is deeply personal. Asad is also living with PBC and understands firsthand what it means to navigate life with a disease that is unfamiliar to much of the public.

“PBC Awareness Month is not just about recognition—it’s about action,” Asad said. “For many patients, the most powerful moment on their journey is the day they meet someone else who truly understands. Our mission is rooted in the understanding that support saves lives.”

Sunday's International PBC Day gathering put that mission into action.

People affected by PBC had an opportunity to meet others who understand the realities of living with a rare disease, build relationships and share their experiences in an environment centered on support rather than isolation.

For PBC Awareness, NFP, creating those connections is an important part of ensuring that people receiving a PBC diagnosis know they do not have to navigate the experience alone.

Bringing Greater Visibility to Black Women Living With PBC

The organization is also working to elevate conversations surrounding the experiences of Black women living with PBC and ensure diverse patient voices are represented in education, advocacy and discussions surrounding the disease.

Earlier in PBC Awareness Month, the organization hosted “Primary Biliary Cholangitis (PBC): Impact on Black Women,” a virtual conversation focused on health equity and the experiences of Black women living with the disease.

By creating opportunities for patients to share their experiences, PBC Awareness, NFP hopes to encourage greater understanding of PBC while empowering individuals to become informed advocates for their own health.

The organization's work extends beyond Chicago. During September, PBC Awareness, NFP is participating in community gatherings and advocacy efforts in several cities, including Phoenix and Washington, D.C., while connecting with patients, advocates and healthcare communities nationwide.

Later this month, PBC Awareness will also participate in the Global Liver Institute's Advanced Advocacy Academy, where Asad will moderate a panel and share lived experience surrounding PBC.

For Asad, however, the heart of the mission remains the people behind the diagnosis.

Sunday's gathering demonstrated the power of bringing individuals together around a shared experience—and the importance of making sure that someone newly diagnosed with PBC can find information, resources and another person who understands.

As PBC Awareness Month continues, the organization is encouraging the public to learn more about the disease, share information with others and help increase visibility for people living with PBC.

PBC Awareness, NFP is a Chicago-based 501(c)(3) nonprofit serving the U.S. PBC community through education, support and advocacy.

For more information about Primary Biliary Cholangitis, PBC Awareness Month and PBC Awareness, NFP, visit pbcawareness.org.

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