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. 

Market Researcher is searching for

Paid Parents/Caregivers Study for PFIC

Purpose: interview parents and patients to learn about the experiences of PFIC 1 & 2 
Looking for: Caregiver or patient around age 5,
US only
Date needed: Now thru 1/14/2022

Medical Communications Company is searching for

Fishawak Phone Interview for Research 

Purpose: conduct research to learn about the experiences of parents who have a child with PFIC 
Looking for: Caregiver of PFIC 1 or 2 patient,
US only
Date needed: Now thru 1/9/2022

Advocacy Opportunities

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

Learn about Bylvay and and treating itch through patient testimonials and from Ryan Fischer, MD, Children’s Mercy Hospital, Kansas City, a PFIC specialist. Register to join.

“By taking a 15-20 minute survey, you could contribute incredibly valuable insights as to your rare disease. Help us create a shared, free resource to make it easier for all of us to pursue successful drug repurposing and get more treatments to patients faster and cheaper!”

To learn more about drug repurposing, click here.

To take the survey on drug repurposing click here.

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.