The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.
As part of its core mission, PSC Partners Seeking a Cure organizes annual conferences to educate and support PSC patients and their caregivers, to promote and facilitate PSC research, to inspire research teams in medical centers to commit to PSC research, and to bring awareness to the serious unmet needs faced by PSC patients. For sixteen years, PSC Partners has chosen its in-person conference sites carefully, and has worked closely with gastroenterology and hepatology departments in centers that are highly experienced in PSC care and research (Baylor in Dallas, Cleveland Clinic, Mayo Clinic Jacksonville, Mayo Clinic Rochester, Northwestern Hospital in Chicago, University of California Davis, University of Colorado Health, University of Pittsburgh Medical Center, and Yale University Medical Center). Through the years, we have consequently collaborated with many of the leading PSC research and treatment experts.
Since the advent of COVID, our in-person events have been cancelled and pivoted to include virtual presentations, recordings and "zoom-rooms." Through virtual events and recordings, available on our website, we have been able to continue to provide information and support. Topics were expanded to include updates about the impact of COVID upon our rare disease community. We also organized the ROADMAP Initiative (Research Opportunities And Development - Meetings to Accelerate Progress) as a means to virtually educate our patient community and bring together patients, caregivers, researchers, clinicians, and industry members to define key unmet needs and brainstorm viable solutions for PSC. A primary objective of the ROADMAP Initiative was to strengthen lines of communication across stakeholders in our community and provide opportunities for patients to share their experiences and identify areas of unmet need. At the start of each meeting, PSC Partners aimed to center and align all stakeholders on the importance of patient voice and patient-driven research.