See The Whole Picture: PFIC Awareness Day 2026
By Emily Ventura, Executive Director & Co-Founder
It took me three years to find my community after my daughter’s PFIC diagnosis. Three years of feeling like I was the only one who understood what our days looked like. PFIC is so rare that most doctors will only ever see one or two cases in their entire career, so when you’re living inside it, you’re mostly living inside your own single story.
Then I started connecting with other PFIC families online.
Each of us was still living our own individual case, our own subtype, our own version of what treatment did or didn’t do for us. This is what the scientific and clinical communities describes as N=1. Every PFIC story is an N=1, and can and should be treated differently. But when you put those stories next to each other, a different picture starts to form. You start to see the patterns. Who gets diagnosed early and who doesn’t. Who has access to a specialist and who doesn’t. Who responds to treatment and who’s left waiting for something better. Alone, we were each learning about our own disease. Together, we were learning about the disease itself. We were starting to see a little more of the whole picture of PFIC.
As we head toward PFIC Awareness Day on October 5th, we want to share stories from all different perspectives. Stories from people living with PFIC about what self-advocacy actually costs and what it gives back. A family’s account of the long road to diagnosis, and everything they wish the medical system had understood sooner. A clinician’s perspective on how far treatment has come, and how far it still has to go. Voices from our global community, reminding us that this picture doesn’t stop at any one country’s border.
None of these stories is the whole picture on its own. That’s the point. Awareness builds this way — story by story, each one adding to the last, until a fuller picture comes into view. And we need more of them than we’ve gathered so far. We always need more perspectives: from people living with PFIC, from parents, from siblings, grandparents, friends, advocates, and specialists.
Every story is a piece of that picture, getting us a little closer to the day that every person living with PFIC, regardless of age, subtype, socioeconomic status, or geographic location, has a diagnosis, understands it, and has access to a treatment plan that actually works for them.
We are gathering our national and global network to join us this PFIC Awareness Day to amplify the community’s voice, to raise funds for the work that will drive this forward, and to shed light on the urgent need for improved care and treatments for all people living with PFIC. Partner organizations around the world, such as PFIC Italia, PFIC Poland, PFIC RD Australia, PFIC Canada, and others, are amplifying this same message at the same time.
Between now and October 5th, I want you to ask yourself a question: Where’s your voice in this?
If PFIC has touched your life in any way, as a patient, a parent, a sibling, a clinician, a friend, we want to see it too! Record a short video, write a few lines, and tag PFIC Network or your local PFIC organization. And if you’re moved to do more, fundraise with us. Join Team PFIC in our push to raise $25,000 by PFIC Awareness Day, part of our goal to reach $100,000 by the end of the year, so PFIC families can get better care and access to treatment.
Help us see more of the PFIC picture. Because awareness isn’t just about the stories we’re telling this year. It’s about every story that isn’t being told yet. And the more of those we can bring into view, the more hope, resources, and brainpower we can bring to bear on getting people with PFIC the treatments they actually need.
With Hope,
Emily