New on PFIC.org: A Deep Dive into Nutrition
Over the years, one topic has come up again and again in our community: nutrition. Practical guidance on what to eat, which supplements are available, and how to navigate the unique challenges that PFIC can create for absorbing fat and vitamins is something our community has been asking for. It’s one of our most requested topics, and we’re excited to share new website content to address that gap.
We turned to someone with a unique set of PFIC scientific expertise and nutritional knowledge for this update: Dr. Laura Bull, PhD, RD, a member of our Scientific-Medical Advisory Board. A longtime researcher at the University of California San Francisco, Dr. Bull was part of the team that identified the gene responsible for PFIC1/FIC1 deficiency and has spent her career studying the genetics of PFIC and other cholestatic liver diseases. She is also a registered dietitian and we are so grateful she said yes when we asked her to put together a comprehensive article on nutritional management in PFIC.
The work began during our 2024 PFIC Family & Scientific Conference, when we asked our community to share their most pressing nutrition questions ahead of a panel discussion on nutrition management. Dr. Bull then reviewed current literature and consulted with dietitians and clinicians experienced in treating people with cholestatic liver disease — examining where nutrition management in cholestasis is handled consistently across institutions and countries, and where approaches differ. She also drew on input from members of our Scientific and Medical Advisory Board. The result is a comprehensive article that we are now ready to share broadly with our community.
We’re excited to publish her work in a new, dedicated nutrition section on pfic.org. Her full clinical article has been adapted into accessible, easy-to-navigate web content for patients and families — covering everything from why nutrition is so important in PFIC, to fat-soluble vitamin & fat supplementation, to formula options, and more!
Thank you
A huge thank you to Dr. Bull, and to the registered dietitians, GI hepatologists, and members of the PFIC community who generously shared their time, expertise, and perspectives to help make this resource a reality.