Events
PBCers 2024 Patient Education Conference Empowering Connections in PBC
PBCers, sponsors and speakers gathered in Phoenix from April 11-13, 2024, for our 16th Patient Education Conference. With the theme of Empowering Connections in PBC, 90 members of the PBCer community shared stories, learned from PBC experts, and supported one another over the course of three jam-packed days.
Thursday evening’s registration and reception was a chance to meet and greet, complete with hors d’oeuvres and swag bags. Some participants opted to create bracelets stamped with their “word,” inspired by our “My Intent” online program.
Friday morning opened with a presentation by conference regular Dr. John Vierling on “Diagnosis and Treatment of PBC.” Other presentations included:
- Jess Schnur on improving the Doctor/Patient Relationship and how Palliative Care can help patients navigate their PBC journey.
- Jessica Lynn from Patient Worthy on “Crafting Your PBC Narrative,” designed to help patients to be comfortable in sharing their diagnosis, whether with family or publicly.
After lunch, patients were invited to write stories, while friends and family met for a discussion on caregiving with Lorraine Steihl, CEO of the American Liver Foundation and caregiver to her husband for many years.
The afternoon session featured these programs:
- Dr. Eric Gershwin, presenting on “Unmet Needs in PBC: How Can We Solve them?” (Dr. Gershwin has spoken at every PBCers Conference except one.)
- Dr. Elizabeth Carey, a hepatologist at Phoenix Mayo Clinic, gave her talk on “What To Expect When You Are Expecting…A Liver Transplant.” While new treatments are keeping most patients from reaching the transplant stage, understanding the process is still worthwhile.
- Our Doctors Panel provided a chance for attendees to ask questions of our experts. The best question fielded by each of the panelists was, “Why did you become involved in PBC?”
At our conference dinner on Friday, we were pleased to honor three outstanding individuals who have been with us since the early years of our organization – Doctors Keith Lindor, John Vierling and Eric Gershwin. Each was honored with a star naming.
Saturday morning started with three presentations:
- Dr. Puneeta Tandon and Emily Johnson discussed “Mediating the Impact of Stress and Increasing Wellbeing in Chronic Conditions like PBC.” Because most patients deal with fatigue, a solution to improve quality of life is welcome.
- Thom Draime and Carol Roberts updated attendees on the PBCers Organization – what we have done and where we plan to go next.
- Dr. Mark Swain presented on “Fatigue in PBC: Who, Why, and What to Do?” – a fascinating presentation for patients who have had health care providers say our fatigue is ”all in your head.” (It turns out that it is.) Dr. Swain showed images indicating definite changes in PBC patients’ brains.
Clinical Trials was the post-lunch topic.
- Dr. Nadege Gunn spoke about “The Real Deal about Clinical Trials: You Are Not the Proverbial Guinea Pig.” Trials are essential for finding and testing better treatments, but there are many misconceptions and fears about enrolling in them. Dr. Gunn explained how it all works.
- Three PBC patients spoke about their clinical trial experiences and answered questions about their participation.
Dr. Marlyn Mayo gave the closing presentation on “Managing PBC Itch: Let’s Start From Scratch” – a topic of great interest to many patients. (Dr. Mayo flew in from Dallas to present on her first day in a walking cast after breaking her foot – that is dedication!) Her presentation covered the variety of treatments that help or don’t, and spoke about treatments in trials and how they work. Her talk provided hope that there will soon be new ways to deal with this terrible symptom.
Sponsors
We thank our generous sponsors for helping to make our 2024 conference a success! They were on hand to answer questions, and also enjoyed meeting and learning from patients. Listening to your varied stories gives them a better idea of what patients live with every day and inspires them in their work.
GOLD SPONSORS:
CymaBay Therapeutics
Intercept Pharmaceuticals
Ipsen
SILVER SPONSOR:
GSK
BRONZE SPONSORS:
Calliditas Therapeutics
Escient Pharmaceuticals
Mirum Pharmaceuticals
TRAVEL SCHOLARSHIPS
Array Insights
Mirum Pharmaceuticals
WHOVA APP SPONSOR:
American Liver Foundation
