PBCers Organization

05/23/2026

Posting for UC Davis about their annual PBC/PSC meeting.

Greetings PSC/PBC patient community members,
We are pleased to invite you to our annual PBC/PSC Patient Meeting, which will take place on Saturday, June 13, 2026 from 9 to 11 a.m. PST.

This event is designed to bring together PSC and PBC patients to hear from Dr. Bowlus regarding updates on research, management strategies, and resources for those affected by Primary Sclerosing Cholangitis (PSC) and Primary Biliary Cholangitis (PBC).

Please follow the link in the attachment or the link below to RSVP for your spot and/or receive a Zoom link to attend the event virtually.

Please save the date, and feel free to reach out with any questions.

https://docs.google.com/forms/d/e/1FAIpQLSdzx-yxnRe_IqiDsruzxQN_r06Y64dKMVQGkOadDinoS3Z4fA/viewform?usp=preview

Warm Regards,
Richard J. Dean
Clinical Research Coordinator

Please answer the questions below to RSVP you and your parties attendance to the meeting and/or to receive the Zoom link to the event.

05/20/2026

We are asking people to submit video messages wishing PBCers Organization some well-deserved recognition. Share your favorite memories about the PBCers, how has your life been impacted by the organization, or how you are connected to the PBCers (and how long)

Submissions are brought together into one beautiful video, and it will be presented at the PBCers Patient Education Conference in Indianapolis June 4-6, 2026 as part of our celebration of 30 years as a non profit supporting PBC patients and family members

With your help, this will be a video celebrating the past 30 years. Please RSVP if you plan on participating, or submit now if you're ready.

Thank you!

Submit your message before Sun, May 24, 2026 5:00 PM.

We're compiling video messages for PBCers Organization. Join in — upload your video message before Sun, May 24, 2026 5:00 PM.

05/15/2026

UPDATE: Because of the issues with their booking rate Wyndham has extended the discount rate to 5/27!

Reminder - Hotel rate for the Patient conference ends 5/20/26.
https://pbcers.org/2026-pbc-conference/
Join us at the 2026 PBCers Conference: PBCers at 30 - Honoring Our Past, Defining Our Future in Indianapolis IN June 4-6.

Registration Fee: $100.00 Conference fee includes Thursday's Reception, breakfast, lunch and dinner on Friday and Saturday.

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

Venue: Wyndham Indianapolis Airport

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.

Booking Link: Wyndham Indianapolis Airport Rooms & Rates

There have been some issues reported with the link - if unable to book using the link call Brittany Steelman at 317-381-6119 or email her at [email protected]

The PBCers Organization is the online and in-person support group for people with Primary Biliary Cholangitis (PBC), care partners and health care team members. We’re your go-to resource for peer support and the latest information on PBC.

05/07/2026

Volunteering at the Conference.

I've been seeing many questions about volunteering and I wanted to share some information.

Please be assured that you will not miss any of the conference speakers if you volunteer. Assignments include:

1. Door monitor - sitting by the door making sure people entering and exiting the ballroom are doing so quietly as not to disturb the speakers.

2. Ballroom prep - needed in the morning before we start and at the end of the meeting. Basically straightening the tables, putting out questions cards etc.

3. Collecting questions from people to pass to the MC. Involves walking around the room quietly.

Any questions, feel free to reach out thru Whova or by email.

If you didn't check the volunteer box put decide you would like to help, please email me directly: [email protected].

Assignments will given to you at registration.

See you all in Indy.

Jeanine

05/07/2026

If you have been to a previous conference you may have seen the PBC Quilts. These were made in the 1990's by patients.



We are creating a new quilt in honor Jean Haynes, a long time member of the PBCers who sewed the original quilts. Jean passed away earlier this year and making a new quilt celebrating our 30th anniversary as a nonprofit supporting PBC Patients is the perfect way to remember all that Jean did for the PBCers Organization.
We start by having patients create a square representing you. You need a 7 inch x 7 inch square of white material, decorate it including your name, where you are from (city and state) and the year you were diagnosed and the year you were transplanted (if applicable). The squares in our quilts have used a variety of methods to decorate - cross stitch, fabric markers, fabric paints, embroidery, computer generated iron-ons. If you need a fabric square sent to you, send a request to [email protected] with the subject QUILT & include your name and mailing address.
Completed squares can be mailed to PBCers Organization 1014 A Greenleaf Road, Rochester NY 14612 or brought to the conference in June. We will be working on the quilt at the conference. Any quilters in the group who would like to assist in the assembly of the new quilt let us know by email [email protected] The quilt has travelled the world with us and has been at every liver conference we go to. Be represented. Make your square!!!!!!!!

05/04/2026

Hi, it's Carol Roberts from the PBCers Organization. 👋

I'm asking people to submit video messages wishing PBCers Organization some well-deserved recognition. Share your favorite memories about the PBCers, how has your life been impacted by the organization, or how you are connected to the PBCers (and how long)

Submissions are brought together into one beautiful video, and it will be presented at the PBCers Patient Education Conference in Indianapolis June 4-6, 2026 as part of our celebration of 30 years as a non profit supporting PBC patients and family members

With your help, this will be a video celebrating the past 30 years. Please RSVP if you plan on participating, or submit now if you're ready.

Thank you!

Submit your message before Sun, May 24, 2026 5:00 PM.

We're compiling video messages for PBCers Organization. Join in — upload your video message before Sun, May 24, 2026 5:00 PM.

04/30/2026

Article about Iqirvo.

Less elevated ALP levels at the start of Iqirvo treatment were tied to higher blood-based response rates in adults with PBC.

04/25/2026

Last Day to register!

04/18/2026

04/16/2026

Have you registered for PBC Lunch & Learn - San Diego? Tickets available until 4/25 - don't miss out on spending the day enjoying lunch with other PBC patients and family at beautiful Carlsbad Beach.