PBC Research Foundation

PBC Research Foundation Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from PBC Research Foundation, Nonprofit Organization, 345 Saxony Road Ste 203A, Encinitas, CA.

The mission of the PBC Research Foundation (PRF 501c3) is to accelerate the path to clinical treatments for rare liver diseases by harnessing the power of patient-centered and patient-owned data.

09/02/2026

The 2026 National Liver Gathering brings people together to connect, learn, and create meaningful change. We are more than excited to welcome you!

By creating space for open conversation, connection, and collaboration, the Gathering strengthens the liver community and promotes greater awareness and understanding. Together, we can share knowledge, support one another, and work toward a future where everyone affected by liver disease has access to the information, support, and care they need.

Learn more and apply now at
communityliveralliance.org/national-liver-gathering

Support PBC advancements and education. Connect with PBCers Organization and our PBC Research Foundation!
09/01/2026

Support PBC advancements and education. Connect with PBCers Organization and our PBC Research Foundation!

Edited to add links:https://TheLiverMatrix.acrossmatrix.comwww.pbcresearchfoundation.org for faqs and more infoCalling P...
08/23/2026

Edited to add links:
https://TheLiverMatrix.acrossmatrix.com
www.pbcresearchfoundation.org for faqs and more info
Calling PBC patients who want to make a change! We are enrolling all patients in our IRB approved, longitudinal study/registry. This study is different in that WE, as PBC patients, own our own data.

Please see the graphics below for more information and FAQ. Let us know you are interested in the comments and one of our patient research coordinators will contact you personally! Not survey savy? No problem, we can set up a call and/or virtual appointment and walk you through it all and it is all HIPAA compliant. Prefer to register on your own? See link in the graphic!

We were honored to be part of such an amazing community event. United Liver orchestrated and executed such an impactful ...
08/01/2026

We were honored to be part of such an amazing community event. United Liver orchestrated and executed such an impactful community event. We educated over 600 people on liver health and handed out over 300 bundles of P(encils), B(ackpacks) and C(rayons) while educating about . I am blessed to have met so many Spanish speaking patients who had NEVER had liver education or screens. We heard from over a dozen individuals who had all the symptoms of PBC and who had zero idea they needed to have labs; most of them were non English speakers. We also helped host them and PBC patients to a lunch and education/support session courtesy of the PBCers Organization. The community was so supportive and thankful and we reached rural patients who would otherwise never be screened and whom truly needed back to school supplies. To watch Gina Bartes, Kristin Little Hatcher, Laura Bonebrake, Catarra Simmons and the local medical providers interact with so many people and give them hope, really highlighted for us the true impact of being part of a patient run consortia. Thank you to all the sponsors and fellow partners!

In July, United Liver worked alongside trusted local partners to deliver three community-centered liver health programs in Phoenix, Arizona, Bledsoe County, Tennessee, and Tippah County, Mississippi.

These programs brought liver health education, technology-enabled screening, family resources, healthcare navigation, and community services directly to the people.

United Liver worked with local leaders to understand each community’s strengths, healthcare landscape, barriers to care, and existing or missing pathways from screening to follow-up. We worked with communities to identify challenges, activate trusted local resources, and create real solutions.

The result:
✅ 3 community programs
✅ 1,360+ people served
✅ 200+ noninvasive liver screenings
✅ All completed in less than two weeks

This is the speed, scale, and community-centered impact United Liver was created to deliver.

We extend our sincere gratitude to the residents, the volunteers and healthcare professionals who gave their time, and the local organizations that shared their trust and knowledge.

Special thanks to our volunteers, partners, and sponsors whose support helped turn community priorities into action.

Stay tuned for highlights from each of these high-impact community programs!

Come join us and meet other PBC patients! Lunch is free!
07/23/2026

Come join us and meet other PBC patients! Lunch is free!

Following the Community Health Fair that starts a 9 AM, you can enjoy a casual lunch socializing with PBC patients and learning about PBC

May Is Hepatitis Awareness Month. Hepatitis affects millions of people worldwide, and many don’t even know they have it....
05/05/2026

May Is Hepatitis Awareness Month.
Hepatitis affects millions of people worldwide, and many don’t even know they have it. That’s why awareness matters. Getting tested, learning the risks, and understanding prevention can save lives. Your liver plays a vital role in your health—don’t take it for granted.
Early detection can lead to treatment, management, and in some cases, a cure. Break the stigma, start the conversation, and encourage those around you to get checked.
Know your status. Protect your future. Spread awareness.

The PBCers Organization  (Carol Roberts ) hosted a lunch and learn event in San Diego county yesterday. Dr. Julio Gutier...
05/03/2026

The PBCers Organization (Carol Roberts ) hosted a lunch and learn event in San Diego county yesterday. Dr. Julio Gutierrez MD lead an engaging and interactive talk that was so informative for all of us patients and our caregivers. So many of us had never met a PBC patient that was local to is and for many, they had never ever met another PBC patient! We had a great turnout! Having a rare disease is lonely and that is why events like this are so important. Ipsen and Gilead Sciences thank you for sponsoring this event! Brenda Tocko Remo you did an amazing job!

Why are paying $400-500 a month after insurance for a generic medication we need to survive?  has created an amazing too...
05/01/2026

Why are paying $400-500 a month after insurance for a generic medication we need to survive? has created an amazing tool to help patients. This is real side by side comparison for urso!

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345 Saxony Road Ste 203A
Encinitas, CA
92024

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