Community Engagement Bulletin

External Engagement Opportunities

For research or to improve scientific understanding of patient experiences with PFIC

We strive to protect the best interests of community members. All external engagement opportunities are submitted through a patient engagement form. All external partners receive a copy of and must abide by the PFIC Network’s Guidelines for External Stakeholder Engagement. 

Specialty Pharmacy is searching for

Help Us Learn About the PFIC Caregiver and Patient Journey

Purpose: Gain additional insights into unique family stories
Looking for: Caregiver or patient,
Global Community
Date needed: Now thru 10/31/2021

Market Researcher is searching for

PFIC Market Research Study with Caregivers and Patients

Purpose: To understand patient and caregiver perceptions of living with PFIC
Looking for: Caregiver or patient with mild to severe pruritus in the USA
Date needed: Now thru 9/17/2021

Advocacy Opportunities

Current opportunities to get involved with rare disease and/or liver organizations

PFIC Network Community driven initiatives

Opportunities to participate and share & participate within the PFIC community

Community Spotlight

Do you want to write a blog post or maybe nominate someone to be in the community spotlight? Let us know by clicking the buttons below! All input is welcome.