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.
The experience of living with a rare disease or caring for someone who has one 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 our support groups into just such a space, so that participants leave feeling connected, understood, and recharged. While living with a rare disease comes with serious physical challenges, it is important to also care for the emotional and mental health burdens of illness as well.
We offer three separate PFIC support groups: adult patients, caregivers and grandparents. The parent and caregiver group meets monthly and the adult patient and grandparent groups meet bimonthly. Meetings are held over Zoom and can involve discussion around our mental health blog post series.
Current Scheduled Group Sessions:
Click the links below to register!
Patients Group
Registration Links:
None at this time
Parents & Caregivers Group
Registration Links:
None at this time
Grandparents & Non-Caregivers Group
Registration Links:
None at this time
If you are interested in attending but none of these dates or times work for you, email mentalhealthsupport@pfic.org.
Private Support Sessions
If you need support but are unable or reluctant to join a group, you can also schedule a one-on-one support session with Lisa. These support sessions are NOT therapy, but they are a space in which to express feelings, share your experiences, receive emotional support, and explore the ways in which you can draw on your own unique strengths to help you better cope with PFIC-related challenges.
If you are interest in a free private support session, please contact mentalhealthsupport@pfic.org.
Groups and private sessions are hosted via Zoom by Lisa Jensen. Lisa has a Masters Degree in Counseling Psychology and personal experience with chronic illness.
Kids Club
Kids Club is a virtual gathering of teens and tweens on 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 is 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!
Please contact us if your child would like to be added to the group!
Check out our Mental Health blog post series:
Pruritus Resources
by Lisa Jensen PFIC pulls a host of challenges in its wake. The waves are…
It’s Okay To Feel This Way:
Navigating Emotions as a PFIC Parent By Lisa Jensen In Rare Siblings, we wrote that…
Rare Siblings
By: Lisa Jensen, PFIC Network Support Group Facilitator When one family member receives a diagnosis…
Deciding In The Dark
By Lisa Jensen Navigating a rare disease can feel like traversing a dark and unfamiliar…
About Lisa:
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 PFIC 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!