2024 PFIC Family & Scientific Conference
2024-04-26 - 2024-04-27 | Cincinnati, Ohio, Cincinnati, Ohio, USA
The 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 Disease Center at CCHMC is focused on improving outcomes and finding a cure for PFIC and related diseases. We are excited to work together to make this conference a special one!
We hope you can join us!

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).

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!

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.

PFIC Parents & Caregivers Virtual Support Group
2023-11-15 19:00 - 20:00, 2023-10-18 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!

PFIC Awareness Day
2023-10-05
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 support.

Parent & Caregiver Support Group
2023-09-23 13:00 - 14:00 UTC
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 a space in which you feel seen, heard, and valued. Our goal is to make this support group into just such a space, so that participants leave feeling connected, understood, and recharged.
All parents and caregivers are invited to join. Register for the session here: https://us06web.zoom.us/meeting/register/tZYrdeGgpj0rGdB7pvklTP2fnWnO8GjxpeRi

Patient Support Group
2023-08-19 15:00 - 16:00 UTC
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 seen, heard, and valued. Our goal is to make this support group into just such a space, so that participants leave feeling connected, understood, and recharged.
All patients are invited to join. Register for the session here: https://us06web.zoom.us/meeting/register/tZ0vd-ugpjwoEt04tryr5hDNPzha3vwiYp_m

Parent and Caregiver Support Group
2023-08-19 13:00 - 14:00 UTC
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 a space in which you feel seen, heard, and valued. Our goal is to make this support group into just such a space, so that participants leave feeling connected, understood, and recharged.
All parents and caregivers are invited to join. Register for the session here: https://us06web.zoom.us/meeting/register/tZcld-CuqzopHtSDCaTTyKm_AysjRq2SX7N7

Grandparent Support Group
2023-07-08 15:00 - 16:00 UTC
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 non-caregiving family members and friends are welcome.
Register for the session here: https://us06web.zoom.us/meeting/register/tZYlf-uuqTMoGdcdRROo8-ZyhoZMRSZR4ldR

Parent and Caregiver Support Group
2023-07-08 13:00 - 14:00 UTC
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 a space in which you feel seen, heard, and valued. Our goal is to make this support group into just such a space, so that participants leave feeling connected, understood, and recharged.
All parents and caregivers are invited to join. Register for the session here: Saturday July 8, 1 PM EST

Grandparent Support Group
2023-01-07 15:00 - 16:00 UTC
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 non-caregiving family members and friends are welcome.
Register for the session here: https://us06web.zoom.us/meeting/register/tZcqcOyhrD8vH90fWFNvhSJAVpWs4iEKvOLj

Patient Support Group
2023-01-07 12:00 - 13:00 UTC
What the support group is about – The group offers a safe and welcoming space in which 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 seen, heard, and valued. Our goal is to make this support group into just such a space, so that participants leave feeling connected, understood, and recharged.
All patients are invited to join. Register for the session here: https://us06web.zoom.us/meeting/register/tZwscumrpjopHNKQiUCQ9Ngfab5_y7DQBqnO

Grandparents & Non-Caregiver Support Group
2022-12-10 15:00 - 16:00 UTC
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 non-caregiving family members and friends are welcome.
Register for the session here: https://us06web.zoom.us/meeting/register/tZwvcOipqD8sEteBhsNDdB6FzutC7kSj88vp

Hosted by Lisa Jensen. Read Lisa’s most recent blog post here: What to do when nobody gets it.

Parent & Caregiver Support Group
2022-12-10 13:30 - 14:30 UTC
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 a space in which you feel seen, heard, and valued. Our goal is to make this support group into just such a space, so that participants leave feeling connected, understood, and recharged.
All parents and caregivers are invited to join. Register for the session here: https://us06web.zoom.us/meeting/register/tZIpcuivrz8qHdUmiVRh6FlFNxiuwR-91TD5
Read Lisa’s most recent blog post here: What to do when nobody gets it.

Patient Support Group
2022-12-10 12:00 - 13:00 UTC
What the support group is about – The group offers a safe and welcoming space in which 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 seen, heard, and valued. Our goal is to make this support group into just such a space, so that participants leave feeling connected, understood, and recharged.
All patients are invited to join. Register for the session here: https://us06web.zoom.us/meeting/register/tZIof-uprzwvH9TwyWR9VkDra2yrkD2cR-DN
Hosted by Lisa Jensen. Read Lisa’s most recent blog post here: What to do when nobody gets it.

Grandparents & Non-Caregiver Support Group
2022-11-12 15:00 - 16:00 UTC
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 non-caregiving family members and friends are welcome.
Register for the session here: https://us06web.zoom.us/meeting/register/tZAtcuytqjotG9S7CETiXzb2BGqaMOZCer6n

Parent & Caregiver Support Group
2022-11-12 13:30 - 14:30 UTC
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 a space in which you feel seen, heard, and valued. Our goal is to make this support group into just such a space, so that participants leave feeling connected, understood, and recharged.
All parents and caregivers are invited to join. Register for the session here: https://us06web.zoom.us/meeting/register/tZYof-qppzojG9Yx8Jz7rQmgcWGwjZY6KA9A
Hosted by Lisa Jensen. Lisa’s Bio:
How are you connected to PFIC?
My friend’s daughter has PFIC.
What is your role in the network?
I facilitate an online support group for families and individuals affected by PFIC.
Where are you located?
On a farm just outside of Lexington, KY.
What do you hope to accomplish?
I hope to help build an active and thriving support group—one in which all members feel safe, heard, understood, and valued. Living with a rare disease or loving someone with a rare disease can be overwhelming and isolating. There is so much empathy, wisdom, knowledge, and experience within the PFIC community, though. My hope is to create a space in which members can turn toward one another, draw upon these strengths, and heal together.
What skills do you bring to the network?
I care about people, have a passion for mental health, and value meaningful connection. In addition to having a Masters Degree in Counseling Psychology, I have firsthand experience in living with a debilitating chronic illness. I created an online community for my fellow Covid-19 long-haulers, where I have both witnessed and felt the healing that comes from being part of a group that deeply understands what you are going through.
What would you sing at karaoke night?
Probably “Landslide,” since I can actually hit the high notes—at least on a good day!

Patient Support Group Session
2022-11-12 12:00 - 13:00 UTC
What the support group is about – The group offers a safe and welcoming space in which 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 seen, heard, and valued. Our goal is to make this support group into just such a space, so that participants leave feeling connected, understood, and recharged.
All patients are invited to join. Register for the session here: https://us06web.zoom.us/meeting/register/tZwsfu-rqTMpGt12zV6huDRpM1XyeZXVNuKa
Hosted by Lisa Jensen. Lisa’s Bio:
How are you connected to PFIC?
My friend’s daughter has PFIC.
What is your role in the network?
I facilitate an online support group for families and individuals affected by PFIC.
Where are you located?
On a farm just outside of Lexington, KY.
What do you hope to accomplish?
I hope to help build an active and thriving support group—one in which all members feel safe, heard, understood, and valued. Living with a rare disease or loving someone with a rare disease can be overwhelming and isolating. There is so much empathy, wisdom, knowledge, and experience within the PFIC community, though. My hope is to create a space in which members can turn toward one another, draw upon these strengths, and heal together.
What skills do you bring to the network?
I care about people, have a passion for mental health, and value meaningful connection. In addition to having a Masters Degree in Counseling Psychology, I have firsthand experience in living with a debilitating chronic illness. I created an online community for my fellow Covid-19 long-haulers, where I have both witnessed and felt the healing that comes from being part of a group that deeply understands what you are going through.
What would you sing at karaoke night?
Probably “Landslide,” since I can actually hit the high notes—at least on a good day!

Patient Support Group Session
2022-10-29 15:00 - 16:00 UTC
What the support group is about – The group offers a safe and welcoming space in which 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 seen, heard, and valued. Our goal is to make this support group into just such a space, so that participants leave feeling connected, understood, and recharged.
All patients are invited to join. Register for the session here: https://us06web.zoom.us/meeting/register/tZEpdeCgrTMoHNVh4DOIxjSS4GvM9S0bOkfI
Hosted by Lisa Jensen. Lisa’s Bio:
How are you connected to PFIC?
My friend’s daughter has PFIC.
What is your role in the network?
I facilitate an online support group for families and individuals affected by PFIC.
Where are you located?
On a farm just outside of Lexington, KY.
What do you hope to accomplish?
I hope to help build an active and thriving support group—one in which all members feel safe, heard, understood, and valued. Living with a rare disease or loving someone with a rare disease can be overwhelming and isolating. There is so much empathy, wisdom, knowledge, and experience within the PFIC community, though. My hope is to create a space in which members can turn toward one another, draw upon these strengths, and heal together.
What skills do you bring to the network?
I care about people, have a passion for mental health, and value meaningful connection. In addition to having a Masters Degree in Counseling Psychology, I have firsthand experience in living with a debilitating chronic illness. I created an online community for my fellow Covid-19 long-haulers, where I have both witnessed and felt the healing that comes from being part of a group that deeply understands what you are going through.
What would you sing at karaoke night?
Probably “Landslide,” since I can actually hit the high notes—at least on a good day!

Parent & Caregiver Support Group Session
2022-10-15 13:30 - 14:30 UTC
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 a space in which you feel seen, heard, and valued. Our goal is to make this support group into just such a space, so that participants leave feeling connected, understood, and recharged.
All parents and caregivers are invited to join. Register for the session here: https://us06web.zoom.us/meeting/register/tZMvc-yorDopGNRLcDbJjV3ED3EB2qLYE-fg
Hosted by Lisa Jensen. Lisa’s Bio:
How are you connected to PFIC?
My friend’s daughter has PFIC.
What is your role in the network?
I facilitate an online support group for families and individuals affected by PFIC.
Where are you located?
On a farm just outside of Lexington, KY.
What do you hope to accomplish?
I hope to help build an active and thriving support group—one in which all members feel safe, heard, understood, and valued. Living with a rare disease or loving someone with a rare disease can be overwhelming and isolating. There is so much empathy, wisdom, knowledge, and experience within the PFIC community, though. My hope is to create a space in which members can turn toward one another, draw upon these strengths, and heal together.
What skills do you bring to the network?
I care about people, have a passion for mental health, and value meaningful connection. In addition to having a Masters Degree in Counseling Psychology, I have firsthand experience in living with a debilitating chronic illness. I created an online community for my fellow Covid-19 long-haulers, where I have both witnessed and felt the healing that comes from being part of a group that deeply understands what you are going through.
What would you sing at karaoke night?
Probably “Landslide,” since I can actually hit the high notes—at least on a good day!

Patient Support Group Session
2022-10-15 12:00 - 13:00 UTC
What the support group is about – The group offers a safe and welcoming space in which 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 seen, heard, and valued. Our goal is to make this support group into just such a space, so that participants leave feeling connected, understood, and recharged.
All patients are invited to join. Register for the session here: https://us06web.zoom.us/meeting/register/tZMkcOygrzkuHNzfIXb6Yg7d-XmIEQhOwQzS
Hosted by Lisa Jensen. Lisa’s Bio:
How are you connected to PFIC?
My friend’s daughter has PFIC.
What is your role in the network?
I facilitate an online support group for families and individuals affected by PFIC.
Where are you located?
On a farm just outside of Lexington, KY.
What do you hope to accomplish?
I hope to help build an active and thriving support group—one in which all members feel safe, heard, understood, and valued. Living with a rare disease or loving someone with a rare disease can be overwhelming and isolating. There is so much empathy, wisdom, knowledge, and experience within the PFIC community, though. My hope is to create a space in which members can turn toward one another, draw upon these strengths, and heal together.
What skills do you bring to the network?
I care about people, have a passion for mental health, and value meaningful connection. In addition to having a Masters Degree in Counseling Psychology, I have firsthand experience in living with a debilitating chronic illness. I created an online community for my fellow Covid-19 long-haulers, where I have both witnessed and felt the healing that comes from being part of a group that deeply understands what you are going through.
What would you sing at karaoke night?
Probably “Landslide,” since I can actually hit the high notes—at least on a good day!

Grandparents & Non-Caregiver Support Group
2022-10-01 15:00 - 16:00 UTC
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 non-caregiving family members and friends are welcome.
Register for the session here: https://us06web.zoom.us/meeting/register/tZ0kdOCorzwsEtDBBI74LBL-HcXP8WiaP3_V

Mental Health Support Session
2022-09-17 15:00 - 16:00 UTC
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 a space in which you feel seen, heard, and valued. Our goal is to make this support group into just such a space, so that participants leave feeling connected, understood, and recharged.
All patients, caregivers, and family members are invited to join. Register for the session here: https://bit.ly/3eCb2LP
Hosted by Lisa Jensen. Lisa’s Bio:
How are you connected to PFIC?
My friend’s daughter has PFIC.
What is your role in the network?
I facilitate an online support group for families and individuals affected by PFIC.
Where are you located?
On a farm just outside of Lexington, KY.
What do you hope to accomplish?
I hope to help build an active and thriving support group—one in which all members feel safe, heard, understood, and valued. Living with a rare disease or loving someone with a rare disease can be overwhelming and isolating. There is so much empathy, wisdom, knowledge, and experience within the PFIC community, though. My hope is to create a space in which members can turn toward one another, draw upon these strengths, and heal together.
What skills do you bring to the network?
I care about people, have a passion for mental health, and value meaningful connection. In addition to having a Masters Degree in Counseling Psychology, I have firsthand experience in living with a debilitating chronic illness. I created an online community for my fellow Covid-19 long-haulers, where I have both witnessed and felt the healing that comes from being part of a group that deeply understands what you are going through.
What would you sing at karaoke night?
Probably “Landslide,” since I can actually hit the high notes—at least on a good day!

Project REACH – India
2022-09-04 10:30 - 11:30 (Asia/Kolkata)
Project REACH (Research, Education, Advocacy, Collaboration, and Hope), an initiative born out of the International Alliance and supported by our Health Equity grant award from Global Genes.
This project consists of a three-part workshop series leveraging interpretation services, dedicated to PFIC disease and advocacy education tailored to each participating country. Through the month of September, we will be executing the first two REACH workshop series – a series for patients in India, and a separate series for Pakistan.
Are you a patient, caregiver, or healthcare provider in these countries? Join us on Zoom!!! Interpreters for Hindi and Urdu will be available. Contact melissa@pfic.org to sign-up.

Project REACH – Pakistan
2022-09-03 13:00 - 14:00 (Asia/Karachi)

Kids Club Community Call (Moved from the 21st)
2022-06-28 16:00 - 17:00 UTC
Join a community call for the kids! This is a time for PFIC kids to get together and talk about anything and everything, play games, and have fun in the PFIC Community.

2022 Scientific Conference
2022-04-29 - 2022-04-30 | Pittsburgh, PA, 1111 Airport Boulevard, Pittsburgh, Pennsylvania, United States, 15231, Pittsburgh, PA, 15231, United States
The PFIC Network will be hosting a scientific meeting for researchers, patients, providers and industry partners on April 29-30 in Pittsburg, Pennsylvania. This will be a hybrid meeting with opportunities to present research both in person and virtual.
Important Dates:
Abstract submission deadline: January 21, 2020
Final decision on presentations: January 28, 2020
Submit abstract: Click Here
See event home: Click Here
See the venue: Click Here

International Alliance Meetings
2022-04-09
Formerly known as the Global Advisory Council.
We invite you to join us at the International Alliance meeting.
This is a space for addressing PFIC resource needs as well as advocacy and policy issues in participating countries. Because of time zone differences across the globe we will be having two different meetings for people to attend. Th first is at 6 AM EST(USA) and the second will be at 3 PM EST(USA) on the same day.
Register for the meetings here:
6 AM EST(USA) Meeting: https://us06web.zoom.us/meeting/register/tZUucumqrT8oGtOE8em4ezBYAA2ljChS2MXE
3 PM EST(USA) Meeting: https://us06web.zoom.us/meeting/register/tZcrd-6grjwuE9WIyGs3Six6u-wv2Vb-O-Kv
