PFIC

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.

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.

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

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

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
2023-07-08 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
2023-08-19 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

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 & 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

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.

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).

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 June Focus Group Meeting
2024-06-20 18:00 - 19:30 (America/New_York)
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 for me/my child?”. CER could also create more consistent approaches in how doctors care for PFIC, reducing the variability in treatment plans that patients experience across different centers.
We’d love to have you and to hear your valuable perspective. Join us from your desk, couch, park, or wherever you are. We look forward to seeing you there! ❤️
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, & 3 today!
This project is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award (EASO-30455).

International Alliance Meeting #1 (July 2024)
2024-07-08 06:00 - 07:00 (America/New_York)
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 PFIC patients, family members and advocates are welcome!
At this meeting, we will give updates on current global advocacy efforts and discuss plans for this year’s PFIC Awareness Day in October.
We hope you can join us!
To accommodate more time zones, we are offering two meeting times: 6:00 AM and 3:00 PM EST.
Register for the 6 AM EST meeting
Register for the 3 PM EST meeting

International Alliance Meeting #2 (July 2024)
2024-07-08 15:00 - 16:00 (America/New_York)

Northeast Ohio Liver Alliance Roundtable Webinar
2024-07-11 18:00 - 19:00 UTC
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 and panelists about patient-centered care!
Register Today!

Project IMPACT August Focus Group Meeting
2024-08-20 18:00 - 19:30 (America/New_York)
Register for the August Focus Group now!
Join our community of patients, parents, clinicians, and researchers on August 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 for me/my child?”. CER could also create more consistent approaches in how doctors care for PFIC, reducing the variability in treatment plans that patients experience across different centers.
We’d love to have you and to hear your valuable perspective. Join us from your desk, couch, park, or wherever you are. We look forward to seeing you there! ❤️
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, & 3 today!
This project is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award (EASO-30455).

2024 PFIC Labor Day Party and Disc Golf Tournament
2024-09-02
Join us Monday, September 2nd (Labor Day) for the official kickoff event of our PFIC Awareness Day fundraising campaign!
This family-friendly event will have disc golf, corn hole and more!
Hosted by Redpoint BBQ in Campton, KY in the beautiful Red River Gorge area.
Check out our event website for more info!

PFIC Awareness Month
2024-10-01 00:00 - 2024-10-31 23:30 UTC
PFIC Awareness Day is October 5th, but we know this disease deserves more than a day. So here at PFIC Network, the entire month of October will be PFIC Awareness Month. All month long we will be raising awareness about PFIC and raising funds for PFIC research and the support services you have come to love.

2024 PFIC Awareness Day
2024-10-05
Every year on October 5th, we recognize, share, and support the PFIC community in hopes for a better future for those we love.
Visit our PFIC Awareness Day page to learn more about how you can get involved!

Kids Club- Official Relaunch Zoom Call
2024-10-09 19:00 - 20:00 UTC
We are so excited to announce the official launch of the PFIC Network’s Kids Club, a gathering space for teens and tweens living with PFIC.

What is Kids Club?
Kids Club is a virtual gathering of teens and tweens that will take place via WhatsApp and Zoom. WhatsApp is a free messaging app that allows participants to share text-based messages, pictures, and emojis within a group. The Kids Club WhatsApp group will be a closed group, meaning that participants must be added by a group admin. This helps protect kids from spammers, scammers, and other unsavory types. If you would like to take further steps to protect your child’s privacy on WhatsApp, you can learn about parental controls here. Lisa Crompton (PFIC Network Program Associate, as well as a PFIC parent) and Lisa Jensen (Support Group Facilitator) will be group admins, along with teen volunteer extraordinaire, Cadence Crompton. There are no hard and fast age rules for WhatsApp, so if you feel that your child is mature enough to benefit from participating in casual group conversations with other kids with PFIC, then we hope to see them there!
Beginning in October, Kids Club will also host monthly Zoom calls for teens and older tweens (suggested age 11+). Lisa Jensen will facilitate these calls, with the aim of handing more and more leadership and autonomy to the kids over time. Calls will include games, icebreakers, casual conversation, and–depending on the interests of participants–opportunities for advocacy and outreach. The first call is scheduled for Wednesday, October 9, 7:00-8:00 PM EDT.
Register Today!

PFIC IMPACT October Focus Group Meeting
2024-10-22 18:00 - 19:30 UTC
Join us for our next Focus Group in October!

Join our community of patients, parents, clinicians, and researchers on Tuesday, October 22nd at 6pm EST on Zoom for a conversation about PFIC research priorities! You do not need to have attended a previous IMPACT Focus Group to join us. For more information about Project IMPACT, please visit our project website.
Register Now!

PFIC Kids Club Meeting-November 2024
2024-11-02 19:00 - 20:00 UTC
Are you a teen or tween with PFIC or BRIC? Join us on November 2nd for our next Kids Club call!
Register today!
What is Kids Club?
Kids Club is a virtual gathering of teens and tweens that will take place via WhatsApp and Zoom. WhatsApp is a free messaging app that allows participants to share text-based messages, pictures, and emojis within a group. The Kids Club WhatsApp group will be a closed group, meaning that participants must be added by a group admin. This helps protect kids from spammers, scammers, and other unsavory types. If you would like to take further steps to protect your child’s privacy on WhatsApp, you can learn about parental controls here. Lisa Crompton (PFIC Network Program Associate, as well as a PFIC parent) and Lisa Jensen (Support Group Facilitator) will be group admins, along with teen volunteer extraordinaire, Cadence Crompton. There are no hard and fast age rules for WhatsApp, so if you feel that your child is mature enough to benefit from participating in casual group conversations with other kids with PFIC, then we hope to see them there!
Beginning in October, Kids Club will also host monthly Zoom calls for teens and older tweens (suggested age 11+). Lisa Jensen will facilitate these calls, with the aim of handing more and more leadership and autonomy to the kids over time. Calls will include games, icebreakers, casual conversation, and–depending on the interests of participants–opportunities for advocacy and outreach.
If you have questions, or would like to be added to the Whatsapp group, please contact us!

December IMPACT Focus Group
2024-12-18 18:00 - 19:30 UTC
Join us for our next Focus Group in December!

Join our community of patients, parents, clinicians, and researchers on Wednesday, December 18th at 6pm EST on Zoom for a conversation about PFIC research priorities! You do not need to have attended a previous IMPACT Focus Group to join us. For more information about Project IMPACT, please visit our project website.
Register Now!

February IMPACT Focus Group
2025-02-20 18:00 - 19:30 UTC
Join us for our next Focus Group in February!

Join our community of patients, parents, clinicians, and researchers on Thursday, February 20th at 6pm EST on Zoom for a conversation about PFIC research priorities! You do not need to have attended a previous IMPACT Focus Group to join us. For more information about Project IMPACT, please visit our project website.
Register Now!

Rare Disease Day
2025-02-28 00:00 - 23:30 UTC
Rare Disease Day is the global movement for rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year. It was created in 2008 by EURORDIS and over 60 national alliance patient organisation partners.
