PFIC Awareness Day 2025: A message to our community
Dear PFIC Community,
Today is PFIC Awareness Day! Each year on PFIC Awareness Day, we come together to shine a light on Progressive Familial Intrahepatic Cholestasis (PFIC)—not just one disease, but a group of rare, genetic liver conditions that affect children and adults around the world. Each PFIC type is unique, with its own challenges, symptoms, and needs.
It’s no secret that the work of PFIC Network is deeply personal to me. My daughter Cedar was diagnosed with PFIC at just 5 months old, back in 2012. At that time, we didn’t have a community to turn to. We felt hopeless, isolated, and alone.
Today, I am honored to know that many families no longer face PFIC in isolation. Many—but not all. And that’s why our work continues.
I am proud of what we have built together as the PFIC Network. I am inspired by families who step forward to support one another, and by those who create resources where none exist. I am inspired by researchers who have broken through barriers to study these diseases, by clinicians who provide treatments, and by industry leaders who are listening to the needs of patients and families worldwide.
Because of this collective effort, there are more options today for those receiving a PFIC diagnosis than there were 12 years ago when Cedar was first diagnosed. But we’ve only scratched the surface.
There is no cure for PFIC. But even when there is, our work will not stop. It will not stop until every patient has a diagnosis, understands their condition, and has an accessible treatment plan. Every single patient.
PFIC Network has become my life’s work. I am deeply grateful to be joined by a community of passionate families, volunteers, clinicians, researchers, and partners who are equally committed to this mission. Together, we are building something extraordinary.
As we mark this year’s PFIC Awareness Day, let’s celebrate how far we’ve come—and recommit ourselves to the work that still lies ahead. Let’s continue to turn awareness into action by sharing our stories, raising our voices, and working together to ensure that every person affected by PFIC has the hope and help they deserve.
We are stronger together and I hope you’ll join us!
With hope & gratitude,
Emily Ventura – Executive Director & Co-Founder of PFIC Network
Check out our PFIC Awareness Day Action Guide for more ways to participate!
