Progressive Familial Intrahepatic Cholestasis

In 2024, 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. We also continued to offer Zoom support groups, 1:1 coaching sessions, financial assistance and care packages to PFIC patients and families in need. In April, we hosted our largest PFIC Family and Scientific Conference yet, with over 130 people attending in person and 60+ attending virtually. The conference brings 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. This year, we hosted the conference in partnership with Cincinnati Childrens Hospital and Medical Center, allowing us to offer continuing education credits for the first time and to broaden our reach to a wider network of clinicians and researchers. One of our biggest research initiatives for the year was the completion of year one of Project IMPACT (Identifying research targets by Merging Patient And Clinician Treatment information.) The goal of the project is to prepare the PFIC community for patient-centered outcomes research. This two year project runs from July 2023-July 2025 and is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award (EASO-30455). Our patient registry is now fully translated into Italian, Spanish and Polish and we were able to share initial data collected at a poster presentation at the North American Society For Pediatric Gastroenterology, Hepatology & Nutrition Annual Meeting. We also awarded our second Small Research Grant, a $30,000 funding opportunity for PFIC research.