PFIC

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

Rare Disease Day
2022-02-28
Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers.
Rare disease day brings people with all rare diseases together in unity to show that just because you have a rare disease, does not mean you are alone.

Kids Club Community Call
2021-12-13 16:00 - 17:00 (America/Kentucky/Louisville)
Join in on the PFIC Kids Club community call with your PFIC Kid! It is a ton of fun for the kids as they learn they are not alone.
The call for December is themed around the holidays! Click the link below to join.
https://www.pfic.org/pfic-community-zoom-room/

Global Advisory Board
2021-12-04 00:00, 2021-10-16 00:00 UTC
Coordinated meetings from Europe to Australia to accommodate the PFIC population across the Globe. Global Advocates have the unique abilities to share needs that are specific to their own countries. Together, we hope that we can create solutions to fit all resource gaps.

AASLD The Liver Meeting 2021
2021-11-12 - 2021-11-16
The PFIC Network will be registering to attend the AASLD Liver Meeting, 2021. Patients and affiliates are encouraged to sign up to learn more! More details on website:
DATE OF EVENT
Friday, November 12, 2021 – 8:00 am –
Tuesday, November 16, 2021 – 3:00 pm

LOCATION

Anaheim, CaliforniaUnited States

PFIC Network State of the Union Address
2021-10-19
The Board of Directors will be hosting a Facebook Live event to update the community on PFIC Network events, organization updates and milestones we have accomplished. We will also go over future plans we have in the works for the upcoming calendar year.

Kids Club Community Call
2021-10-18 16:00 - 17:00 UTC
Join in on the Kids Club Community call starting at 4 PM EST!

Impact of NICE Decision on PFIC Patients
2021-09-29 15:00 - 16:00 (America/Halifax)
There has been a lot of talk around the recent NICE decision to not recommend reimbursement of odevixibat for treatment of patients with PFIC in the UK, England and Wales.
PFIC Network has been working with other advocacy organizations, PFIC Specialists and Albireo to understand what this means for patients in the UK and abroad.
Dr. Richard Thompson of Kings College London will join PFIC Network leaders to give a brief informational session with an opportunity for Q&A session.
Register in advance for this meeting at this link. Language support and time zone support is available, email info@pfic.org if requested. https://us06web.zoom.us/meeting/register/tZcucuuoqTwoHdcbAfDCm78GJ2aWiq7mUGv3

Global Genes Rare Patient Advocacy Summit
2021-09-28 - 2021-09-29
The PFIC Network will be registering for and attending the Global Genes Rare Patient Advocacy Summit. Patients, ambassadors and advocates are encourage to reach out to learn more and join us! Information taken from website:
Each year Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners and allies. After going virtual in 2020 with Global Genes LIVE! A RARE Patient Advocacy (un)Summit, we are looking forward to seeing you all in person in San Diego 2021.
Join us for a variety of interactive and educational events, meet-ups, workshops and networking opportunities. Here you’ll have the opportunity to connect and engage with others in the rare disease community, while experiencing the sense of community and belonging we’ve missed so much. Gain insights about the latest in rare disease innovations, best practices for advocating on an individual and organizational level, and actionable strategies they can implement immediately to accelerate change.

Kids Club-Zoom Chat
2021-09-13 16:00 - 17:00 UTC
This zoom chat is very special. It is a chat room hosted by kids with PFIC, for kids with PFIC. The hosts, Cade (17), Cadence (11) and Cedar (9), have all been through/are going through PFIC and understand what it is like to be a kid who is itchy, who has had multiple hospitalizations, who has had a liver transplant, who has to take many medications, or whose parents just keep talking about PFIC.
These kids are very special. Starting on September 13 @ 4 pm EST (USA), they are going to meet via zoom. They enjoy getting together on zoom to do art together, have show and tell, talk about their favorite activities, or just hang out. They are also open to talking with other kids about having PFIC.
Kids of all ages, from all areas of the world are welcome. PFIC Network can help with language support, time zone conversion, or tech facilitation if needed, so please contact lisa@pfic.org if you or your child would like to join but may need additional assistance

Virtual Family Conference
2021-07-16 - 2021-07-17
Thanks to the ALGSA and MyCityMed, PFIC will be co-hosting a 2021 virtual family conference. There will be ways to learn more about PFIC and what’s new in the research of PFIC, opportunities to learn more about how you can advocate PFIC, and ways to interact with other patients, families, doctors, scientists and industry professionals. We hope you will join us!
Registration will be coming soon!

EASL International Liver Congress 2021
2021-06-23 - 2021-06-26
We will be attending the virtual event offered by EASL. Patients and affiliates are encouraged to join to learn more! Details taken from website:

The International Liver Congress™ 2021, our flagship congress, is delivered to you on our online learning platform, EASL Campus. ILC 2021 is all about beating liver disease together. We will tackle this challenge from multiple perspectives, drawing on multidisciplinary expertise. ILC 2021 will be your live EASL Campus experience, enabling you to broaden your knowledge and build bridges, between people and areas of expertise. Getting onto EASL Campus offers you the perfect mix of mingling and learning.
We are pleased to announce new dates: ILC 2021 will take place from Wednesday to Saturday, 23–26 June.
Calling upon our international, multi-generational network and employing a range of learning methods, we will draw inspiration from the evolution of science. Together.

Community Call - June
2021-06-22 15:00 - 16:00 UTC
PFIC Network seeks to provide a place for our patient and caregiver community to chat and support each other. Beginning in April, we will host a monthly zoom chat rooms each with a theme that is of interest to members of our community. Please join us as we support each other through the devastations and sometimes even triumphs of PFIC. It not only motivates us to continue this work, but it provides a place for support for us, too. We look forward to seeing you.
