PFIC

PFIC Parents & Caregivers Virtual Support Group
2023-10-18 19:00 - 20:00, 2023-11-15 19:00 - 20:00 UTC
Virtual PFIC Support Groups provide a safe and welcoming space in which patients, family members and caregivers of PFIC patients can connect with one another, share their experiences, and offer one another support. All patients, caregivers, and family members are invited to join.
Register Now!

IMPACT Module 2 Launch Day
2023-12-04
Module 2 of Project IMPACT is now live! Complete it today!
If you are a PFIC patient (ages 14+), parent, healthcare provider, or researcher, we want YOU to participate!
IMPACT modules are designed to help PFIC families AND clinicians & researchers learn more about patient-centered coutcomes research (PCOR). Having a shared base of PCOR knowledge helps us all be prepared to have important conversations about what PCOR studies could look like in PFIC.
There will be a total of 6 modules throughout Project IMPACT. Each one consists of a learning module and a feedback survey and takes about 25 min to complete. Module 1 is also still available if you haven’t completed it yet.

Project IMPACT Focus Group Meeting
2023-12-20 18:00 - 19:30 (America/New_York)
Are you a PFIC patient, caregiver, researcher or clinician? Have you completed the Project IMPACT Module 2 learning activity? If so, we hope you can join us for a virtual focus group to discuss the topic of Module 2, “How can I contribute to patient centered outcomes research?”. Completing Module 2 prior to the focus group helps ensure that we have a shared based of knowledge to help stimulate meaningful conversations.
The learning modules and focus groups are important parts of Project IMPACT, our ongoing patient-centered outcomes research education project. This project is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award (EASO-30455).

Register for the focus group now!

Project IMPACT Focus Group Meeting
2024-02-20 18:00 - 19:30 (America/New_York)
Register for the February Focus Group now!
This is the last focus group meeting before we come together at the 2024 PFIC Family & Scientific Conference in April! During the meeting, we will get a serious sneak peak of our new PFIC treatment information web platform, and provide one more chance for everyone to share their feedback before it goes into its final development phase.
We will also do an exciting exercise together to prepare for an IMPACT activity at the Conference. Our plan of action: begin creating a list of community-identified priorities to focus on in future PFIC research.
You do not need to have attended a previous focus group to join this one! Project IMPACT is our ongoing patient-centered outcomes research education project. Check out the IMPACT project webpage for more info on the project. Interested in getting involved and getting up to speed? Click the “Participate” button on the webpage to take Modules 1 & 2 today!
This project is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award (EASO-30455).
