We had two successful local meetings for members of the PBC patient community in January. Our first meeting was held January 27, 2018 at the UC Davis campus and was a combined meeting of PBC and PSC patients. Because there are many similarities between Primary Biliary Cholangitis and Primary Sclerosing Cholangitis (besides the obvious similarity in names and acronyms), this meeting was especially interesting. Dr. Christopher Bowlus updated the attendees on the latest information on both PBC and PSC as well as upcoming clinical trials and potential therapies. There was also a robust Q&A session with a series of well presented questions about the specifics of disease, diagnosis and treatment options.
The second local meeting was held on January 30, 2018 in San Diego at the 211 Conference Center. This meeting was possible by a collaboration between the American Liver Foundation and PBCers Organization. As the local group leader for California in the PBCers Organization, I felt it was beneficial to facilitate a local meeting in the San Diego area as so many PBC patients have been asking for this type of meeting. The Ask The Experts format of the meeting allowed presentations from both the medical and patient perspectives and the Q&A was stimulating.
As the new year is well upon us all, an important part of living with a chronic disease is to have local support networks that can connect people in a geographical area to meet when desired. Support online is a great tool but there is something very personal in the connections we make face-to-face and that can only be achieved by the patient community coming together.
From these meetings, a list has been developed of participants that want to stay connected and informed about PBC. Rome was not built in a day and neither are local support groups. They are living things that require commitment and feeding (participation). It is my hope that by starting this process on a local level, these patient community members will grow their own local group and continue to network with others to aid in providing support to all PBC patients.
If you are interested in participating in a local group within , please California or elsewhere in the U.S., please send an email to cm@pbcadvocate.org to be added to our list for meeting information and connection to a local group leader.
Together, we are on a journey with PBC for the rest of our lives. Our lives deserve to be the best that they can be and together we do make it a manageable chronic disease that does not define us as people.
P.S. The PBCers 2018 Conference is May 17-19th in Houston, TX. Learn more and Register for this important national conference by visiting: http://pbcers.org/2018PBC/conf.htm. I hope to see you there!
PBC Advocate 