Good efforts “Mitchell-Thain’s hiring comes soon after GLI formed its Pediatric and Rare Liver Diseases Council to elevate the visibility and voice of the pediatric and rare liver diseases community while advancing policies and research to help patients. The PBC Foundation is an active council member. GLI is also hosting an Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting on PBC in collaboration with the U.S. Food and Drug Administration (FDA) in 2022. A PFDD is a systematic approach to help ensure that patients’ experiences, perspectives, needs, and priorities are captured and meaningfully incorporated into FDA drug development and evaluation. “
Maybe these efforts would eventually change the agency’s/agencies’ policies.
https://www.globalliver.org/news/2021/07/gli-welcomes-prominent-international-patient-advocate-as-patient-insights-director