Parent & Caregiver Support Group
What the support group is about – The group offers a safe and welcoming space in which parents and caregivers of PFIC patients can connect with one another, share their experiences, and offer one another support. Why it’s important – Parenting a child with a rare disease can be exhausting, overwhelming, and isolating. It’s important to have […]
PFIC Awareness Day
The fifth annual PFIC Awareness Day is October 5, 2023. The PFIC community around the world will hold advocacy and awareness events to honor patients, families, and caregivers. Awareness Day is used to spread information about our rare disease to help our supporter community grow, and help us find more patients who need help and […]
PFIC Parents & Caregivers Virtual Support Group
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!
PFIC Parents & Caregivers Virtual Support Group
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
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 […]
Project IMPACT Focus Group Meeting
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 […]
Project IMPACT Focus Group Meeting
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 […]
2024 PFIC Family & Scientific Conference
Cincinnati, Ohio Cincinnati, Ohio, USAThe PFIC Family & Scientific Conference is back! This unique conference brings together PFIC patients, families, clinicians, researchers, and industry stakeholders for an unforgettable experience of learning, sharing, and networking. We are partnering with Cincinnati Children’s Hospital and Medical Center to host the 2024 conference in Cincinnati, Ohio. The Undiagnosed and Rare Liver […]
Project IMPACT June Focus Group Meeting
Register for the June Focus Group now! Join our community of patients, parents, clinicians, and researchers on June 20th on Zoom for a conversation about research! Why? We will be brainstorming how a specific type of research called Comparative Effectiveness Research (CER) could help address important questions like, “Which treatment is the best choice […]
International Alliance Meeting #1 (July 2024)
Join us July 8th for a meeting of the PFIC Network International Alliance! The International Alliance seeks to provide an international identity for PFIC organizations and the global PFIC community as a whole. It is a space dedicated to addressing resource needs, as well as advocacy and policy issues specific to each participating country. All […]
International Alliance Meeting #2 (July 2024)
Join us July 8th for a meeting of the PFIC Network International Alliance! The International Alliance seeks to provide an international identity for PFIC organizations and the global PFIC community as a whole. It is a space dedicated to addressing resource needs, as well as advocacy and policy issues specific to each participating country. […]
Northeast Ohio Liver Alliance Roundtable Webinar
Our Executive Director, Emily Ventura, will be a panelist at an upcoming free webinar focusing on PFIC and Wilson's Disease hosted by the Northeast Ohio Liver Alliance. Webinar participants will have the chance to learn from two of the nation’s foremost expert physicians in these two highly rare liver diseases. Hear a conversation between providers […]