About Us

PBC Awareness: Elevating Patient Voices. Empowering Lives.

PBC Awareness, NFP is a patient-centered 501(c)(3) nonprofit organization dedicated to improving the lives of people affected by Primary Biliary Cholangitis (PBC), a rare autoimmune liver disease. Founded by Board Certified Patient Advocate and Board President, L. Marie Asad, PBC Awareness was created from a deeply personal understanding of the challenges that can accompany a rare-disease diagnosis—from unanswered questions and delayed diagnosis to isolation, fatigue, and difficulty finding trusted resources. We are building a community where every person affected by PBC feels seen, heard, informed, and supported.

What We Do

PBC Awareness, NFP transforms lived experience into meaningful action.

We:

– Provide trusted, patient-friendly education and resources.

– Create supportive spaces for patients and caregivers to connect.

– Elevate patient experiences through storytelling and advocacy.

– Increase public understanding of PBC and its effect on everyday life.

– Promote earlier diagnosis and informed conversations with healthcare professionals.

– Address disparities in diagnosis, access to care, research, and representation.

– Collaborate with healthcare professionals, researchers, policymakers, advocacy organizations, and community partners.

– Support educational opportunities that prepare patients to become informed advocates and leaders.

Advancing Health Equity

PBC can affect people from every background, yet not every patient experiences the same path to diagnosis, treatment, or support.

We are committed to bringing greater visibility to communities whose experiences have historically been overlooked—particularly Black women living with PBC. By creating space for diverse perspectives and addressing barriers to care, we help ensure that education, advocacy, research, and healthcare conversations reflect the full PBC community.

Led by Experience

Our leadership includes experienced advocates and people personally affected by PBC. This lived experience guides our priorities, programs, partnerships, and commitment to serving the community with compassion, integrity, and purpose.

We believe patients are not simply participants in healthcare—they are essential partners in shaping it.

You Are Not Alone

Whether you are newly diagnosed, have lived with PBC for many years, care for someone with the disease, or want to support our mission, you have a place in this community. Together, we are raising awareness, strengthening connections, advancing equity, and creating a future in which every PBC patient has the information, support, and opportunity to thrive.

PBC Awareness, NFP

Elevating Patient Voices. Empowering Lives.