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.
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.
Join the EveryLife Foundation Community Congress (US Policy & Advocacy)
“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
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.