PBC Research Foundation

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!

PBC (Primary Biliary Cholangitis) Lunch & Learn - Ripley, MS Following the Community Health Fair that starts a 9 AM, you can enjoy a casual lunch socializing with PBC patients and learning about PBC

Join our chief medical advisor Dr. Julio Gutierrez and our North American PBC Alliance, United Liver member and president of the PBCers Organization Ms. Carol Roberts and learn about PBC. This is brought to you by Liver Coalition of San Diego.

Liver Q & A Webinar: The A, B & C's of PBC (Primary Biliary Cholangitis)

Join us on July 2nd with Julio Gutierrez, MD, from Scripps Health | Center for Organ Transplantation, and Carol Roberts, President of PBCers. Moderated by Liver Coalition Board President Chaplain Dr. Neshea Harrison.



Register here:

https://livercoalition.zoom.us/.../WN_QYOOt2FrRcSmJ6Rp1l32bw

Arizona friends, this will be an amazing event with liver screens and experts! Join United Liver, PBCers Organization, and many more!

This week we attended the PBCers patient conference. We were surrounded with others who live with PBC and felt so supported. We were there consenting patients and our founder and CEO Cecilia Dueñas presented on the impact of liver disease on mental health and self care. A huge thanks to Jason Colquitt, Allison Moore, Kristin Little Hatcher and United Liver for educating patients on the difference between IRB approved, regulatory grade, patient owned data collection and studies vs data collected that is not pushing our space forward and may not be private. The PBC space needs ethical data collection. Thank you to PBCers Organization and Carol Roberts for putting together such an amazing event.

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 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 tool to help patients. This is real side by side comparison for urso!

Last day to register for Southern California lunch and learn event!
https://www.eventbrite.com/e/pbc-lunch-learn-san-diego-tickets-1987182322821?fbclid=IwdGRjcARaG9NleHRuA2FlbQIxMQBzcnRjBmFwcF9pZAwzNTA2ODU1MzE3MjgAAR6-KKtaLOjlGjjDeCTqaE6Jfs2uiGpF8aF-nm_VLyyRbQsa_d794j6W7CNRtA_aem_BgxTpiG5F_Sovf6CdZC0Vw

Southen California PBC patients and caregivers: The PBCers Organization is hosting a lunch a learn on Saturday May 2nd in Carlsbad. This is a free event to get us locals together and maybe even form a support group! The location is gorgeous and easy to access from Riverside, Los Angeles, Orange County and proper San Diego. It is minutes from the beach and flower fields. Reach out to me or the PBCers with questions!