This, year the PCBers will meet in Indianapolis, Indiana. They will be celebrating 30 years as a community, as well as celebrating a much brighter future with the rare, autoimmune liver disease known as Primary Biliary Cholangitis (PBC). PBC affects women 10x more frequently than men. It progresses almost silently to start with, showing up initially in lab tests that reveal a high alkaline phosphate level with a normal bilirubin level, which will rise on later stages. Eventually a variety of symptoms appear that could be attributable to so many conditions – fatigue, achiness, difficulty sleeping, and one symptom that is unique: itchiness. The disease usually appears between the ages of 40-60. The cause is not known, but we do know that it is not alcohol- or drug-related.

Your advocacy group is filled with your people! They will “get” you and you will “get” them. Together you will learn and support each other. Last year, Patient Worthy staff attended the PCBer’s conference, which was covered in this article.

Denise Crompton, rare disease parent and author (Diagnosis Rare Disease, Kelley’s Journey Facing a Rare Disease with Courage, Imposter Nurse) wrote this article covering the conference as well.

Thanks to the efforts of this advocacy and the generous support of a number of pharmaceutical companies, attending is affordable. Thank you to Ipsen, Gilead, Mirum, GSK!

Registration is just $100 and includes meals. The first 50 people who register and attend will also receive a $500 scholarship to help cover their travel costs!

Visit pbcers.org to learn more.