contd Advocacy and Resource Ne

In 2022, PFIC Network provided program services in the areas of peer support, education, outreach, advocacy and research to further our mission of improving the lives of patients and families affected by PFIC worldwide. Through our peer support program, we launched monthly Zoom support groups led by a facilitator and began offering 1:1 Zoom coaching sessions for families that need additional support. We continue to offer financial assistance and care packages to PFIC patients and families in need. A major initiative for our advocacy program was hosting the International Alliance series of virtual meetings. These meetings gather international patient leaders to discuss their country-specific issues and collaborate on shared solutions. This led to the development of a partnership with PFIC Italia to expand our financial assistance program to international recipients starting in January 2023. Through our outreach, advocacy and education programs, we launched the inaugural session of Project REACH (Research, Education, Advocacy, Collaboration, and Hope), a virtual workshop series and needs assessment in India and Pakistan to help create an advocacy action plan for local patient leaders, educate patients about available resources and build relationships between patients and providers in these underserved countries. Project REACH was supported by a RARE Impact Grant from Global Genes. 2022 was a significant year for our research program. We hosted our first science-focused conference, bringing PFIC researchers, clinicians and industry stakeholders together with PFIC patients and families to discuss unmet needs of the patient community and to provide updates about ongoing PFIC research. It was a hybrid meeting with 60 in-person and 25 virtual participants from all over the world. We relaunched our patient registry in April 2022 on a new platform (REDCap) that improves the quality of the data collected, allows us to collect longitudinal data and gives us better ownership and control of our registry data. We also began a major translation project that will allow us to offer the registry in Italian, Spanish and Polish in 2023. We disbursed the first $30,000 PFIC Network Annual Small Grant towards PFIC research and announced another round of that funding opportunity that will accept applications in 2023.