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!