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.
Advocacy Opportunities
Current opportunities to get involved with rare disease and/or liver organizations
Join the Phone Tree!
What is the Phone Tree?
The phone tree is a tool for us to use as a community to notify each other of issues, advocacy opportunities, and engagement opportunities as they arise. The phone tree starts with the PFIC Network phone tree manager, who oversees the phone tree and is the one who begins “calling” other volunteers who have joined. A “call” can be as simple as an email or direct message, or a direct phone call when appropriate.
List of Organizations that collaborate with
PFIC Network &/or PFIC patients
PFIC Network Community driven initiatives
Opportunities to participate and share & participate within the PFIC community
Community Spotlight
The amazing community members at the Scientific Conference!
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.