The PSC Partners 20th Anniversary Conference, held in October, in Phoenix, Arizona, was a milestone event that gathered over 360 people living with PSC, caregivers, PSC thought leaders, drug developers, and regulators who together celebrated PSC Partners’ twenty years of spearheading PSC education, support, and research.
Twenty years of groundbreaking annual conferences brought tangible progress in global PSC awareness, in patient-centered and patient-led initiatives, and in researcher and clinician engagement with the patient community. During the three days, the past twenty years came to life through a retrospective of pictures and vignettes that unified old-timer and first-timer conference attendees.
The PSC Partners annual conferences have served as a crucible for new collaborations with PSC experts and for innovative projects. Traditionally, the conference has been held in different U.S. medical centers with PSC expertise, to enlarge the geographical reach and to engage an increasing number of medical advocates who could witness first-hand the unmet needs of people living with PSC.
The strong medical-patient community PSC Partners built through the years has brought meaningful collaborations. Physicians/researchers from all over the world have traveled to PSC Partners conferences to discuss, plan, and work together on research prioritized by patients. The PSC Partners International Collaborative Research Network (ICRN) that included 50 international thought leaders and regulators met prior to the conference and stayed on to share their expertise with patients and caregivers and to fully participate in the celebrations. No eyes stayed dry as patients and caregivers shared their PSC stories with all conference attendees.
Dr. Tom Karlsen, head of the Norwegian PSC Center in Oslo, first recipient of a PSC Partners research grant in 2009, and advisor to PSC Partners, co-hosted the 2024 conference, marking the PSC Partners milestones he participated in through the years. Dr. Christopher Bowlus (University of California at Davis), head of the PSC Partners Scientific/Medical Advisory Committee (SMAC) since its inception, and advisor to the PSC Partners Patient Registry; Dr. Richard Green, SMAC co-chair during fourteen years, (Northwestern University, Chicago); Dr. Joshua Korzenik, 2023 conference co-chair (Harvard University); Dr. Cynthia Levy, SMAC member and active member in numerous PSC research collaborations (University of Florida), Dr. David Assis (Yale University) SMAC member, gave retrospective account of twenty years of PSC research, and each filled the community with hope by highlighting the promising new approaches in PSC research, PSC-IBD research, and PSC Partners-driven initiatives.
Dr. Jennifer Lai (University of California in San Francisco) gave her much-anticipated presentation on nutrition with PSC; topics including transplant issues and post-transplant management (Dr. Lisa Forman of the University of Colorado and Dr. Richard Green of
Northwestern Unifersity), pediatric PSC (Mercedes Martinez of Columbia University and Dr. Marianne Samyn of King’s College, London), stress management (Dr. Jerome Shofferman), teen concerns (Dr. Amanda Ricciuto of SickKids Hospital Toronto),
Dr. Kidist Yimam (California Pacific Medical Center) and Joanne Hatchett (retired RN, MS, FNP, PSC Partners staff member) picked the brains of conference attendees on how to expand the PSC community and include under-represented people living with PSC.
Recordings of presentations are on our YouTube channel as PSC Partners would like to share all our learnings with those who couldn’t attend the conference.
PSC Partners founder and CEO Ricky Safer shared her personal PSC journey, her passion for providing education and support and facilitating PSC research which is now the PSC Partners community’s story. Perhaps the hardest to convey is the feeling dominating the conference, a feeling of being a close family and the indescribable exhilaration shared by all those attending the conference, so well summarized by the song conference participants including PSC researchers attending the Saturday Night Gala and dressed in wild 1920’s attires sang in unison at the top of their voices:
“We are family I got all my sisters with me We are family Everyone can see we’re together As we walk on by And we flock just like birds of a feather All of the people around us they say "Can they be that close?" Just let me state for the record We’re givin’ love in a family dose High hopes we have for the future And our goal’s in sight We are family (Get up, get up, y’all) Get up everybody and sing We are family I got all my sisters with me…"
Join us for the 21st Annual Conference in Denver Sept. 12 - 14. Early bird registration and hotel block is now open: cvent.me/7ggMB1.
