PBC Research Foundation

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!

This Donate Life Month, we stand together to support those in need—patients, families, donors, and healthcare workers. Every story matters, and every donor makes a difference. By spreading awareness and choosing to register, we can create a future where fewer lives are lost waiting for a transplant.

PBC patients and caregivers, this is the conference of the year!

Join us at the 2026 PBCers Conference: PBCers at 30 - Honoring Our Past, Defining Our Future in Indianapolis IN June 4-6.

Registration Fee: $80.00 until April 24th starting April 25th $100,00 Conference fee includes Thursday's Reception, breakfast, lunch and dinner on Friday and Saturday.

Patient Scholarship: $500.00 ( patients only, requirements -register by May 1st & attend. You will recieve the scholarship in cash at lunch on Saturday)

Venue: Wyndham Indianapolis Airport
Booking Link: https://www.wyndhamhotels.com/wyndham/indianapolis-indiana/wyndham-indianapolis-airport/overview?checkInDate=06/03/2026&checkOutDate=06/07/2026&groupCode=060326PCB
There was been a glitch reported with this booking link - if it pops up and says there are no rooms available it is not true. They say it should be corrected by 4/22, try again or call the hotel directly - just make sure you are getting the PBCers rate of $120 per night!

Room Rate: $120 per night (rate valid June 3rd - June 9 for those wanting to explore Indianapolis beyond the conference) Rooms must be booked by May 20, 2026 to receive this rate. Free 24 hour Airport Shuttle is available. For those driving Parking is free.

The conference opens Thursday June 4, 2026 with Registration and Welcoming Reception. Meet the other attendees while enjoying the food and drinks from 6 to 8:30.

Friday starts with registration for those who arrived later Thursday night and breakfast in Fortune Hall at 7:30 AM. Presentations in the Hall of Champions begins at 9 AM ending around 4PM. After a break we will return for dinner at 6 which will include a celebration of our 30 year anniversary as a non profit supporting PBC patients. Saturday will follow the same schedule.

This year we are offering an option for those attendees the may have trouble hearing in a large conference room. We have partnered with KODA to provide captioning through an app on your phone. This app also will be able to translate to Spanish.

The PBC Research Foundation will be in attendance to premiere enrollment in their patient registry. You will be able to book a time to meet with them and start the process.

https://whova.com/portal/registration/xRroMboaBlrG4ZryCWLY/

Happy Doctors’ Day 🩺
Today, we recognize the dedication, compassion, and expertise of the providers who care for those living with Primary Biliary Cholangitis (PBC).
Managing PBC takes a thoughtful, long-term approach, and we are deeply grateful for the healthcare professionals who guide patients through every stage of their journey with knowledge and care.
We are especially thankful for our medical advisors, Dr. Laura Bonebrake and Dr. Gutierrez, whose leadership and insight help drive better understanding and support for the PBC community.
Join us in celebrating and thanking the providers who make a difference every day!

March is Autoimmune Awareness Month 💜
This month, we support those living with autoimmune diseases and work to raise awareness for the millions of people affected every day.
Primary Biliary Cholangitis (PBC) is one of many autoimmune diseases. It occurs when the body mistakenly attacks the liver’s bile ducts, which can lead to serious liver damage over time if not properly treated.
Awareness matters because the more we share, the more we can support early detection, improve treatment, and help those navigating life with PBC feel seen and supported.
Help us spread awareness and show your support this month 💜