Events

Grandparent Support Group

Most of our programs focus on supporting PFIC patients and their caregivers. The impact of PFIC spreads far beyond this group, though. If you are a non-caregiving relative or close friend of a PFIC patient, you already know this. This support group is for YOU! We’ve created this group with grandparents in mind, but all […]

Parent and 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 […]

Grandparent Support Group

Most of our programs focus on supporting PFIC patients and their caregivers. The impact of PFIC spreads far beyond this group, though. If you are a non-caregiving relative or close friend of a PFIC patient, you already know this. This support group is for YOU! We’ve created this group with grandparents in mind, but all […]

Parent and 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 […]

Patient Support Group

What the support group is about – The group offers a safe and welcoming space in which adult PFIC patients can connect with one another, share their experiences, and offer one another support. Why it’s important – Having a rare disease can be exhausting, overwhelming, and isolating. It’s important to have a space in which you feel […]

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 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 […]