2025 PFIC Awareness Day: Stronger Together!
This year, the focus of our PFIC Awareness Day campaign was highlighting that PFIC is not one single disease, but a group of rare liver conditions, referred to as PFIC “types”, that affect both children AND adults worldwide. Like members of the same family, PFIC types share many similarities while each also faces unique challenges. Beyond the conditions themselves, people with PFIC face additional barriers that vary depending on where they live, such as access to genetic testing, treatments, and specialized care.
PFIC Awareness Day is also our largest annual fundraising push. The momentum created by our community each October fuels ongoing PFIC research, education, outreach, and family support programming all year long. #StrongerTogether is a reminder that when awareness grows, stories are shared, and our community unites behind a common mission, meaningful change becomes possible.
Awareness & Education Campaign
PFIC- Not just one disease
During PFIC Awareness Day 2025, we focused on helping our community better understand that PFIC is not just one disease, but a group of related rare liver conditions, each with its own causes, challenges, and unanswered questions.
In a special video message recorded by our partners at PFIC Italia Network, Dr. Richard Thompson explained how new discoveries continue to reshape our understanding of PFIC, and why more research is still needed to improve diagnosis and treatment for every patient. In addition, Dr. Chunyue Yin contributed a new guest blog post titled “Understanding PFIC Naming: Looking Beyond the Numbers.” This easy-to-read article explains what PFIC is, why the types are numbered, why those numbers don’t tell the full story, and why that matters for both treatment and research.
PFIC in adults
Did you know adults can be diagnosed with PFIC? Another important message we shared during PFIC Awareness Day 2025 is that PFIC is not only a pediatric disease. While it’s most often diagnosed in infancy or early childhood, more and more adults are now living with PFIC. They represent a spectrum of experiences, from those who were diagnosed in childhood and are now navigating adulthood and transition of care, to those who are only now being diagnosed later in life.
Adults with PFIC face unique medical, emotional, and social challenges. They often encounter gaps in care, limited awareness among adult hepatologists, and a lack of research data focused on long-term outcomes.
By highlighting the experiences of adults living with PFIC, we aim to raise awareness that PFIC is a lifelong condition, one that requires continued attention, understanding, and advocacy well beyond childhood.
Thank you to Olivia for sharing her experiences! Check out her Youtube channel to hear more about her PFIC experiences.
Awareness Day Fundraising Recap
In 2025, we raised $93,000 to support PFIC research and our vital community programming!
In addition to raising awareness about the disease, PFIC Awareness Day is also our biggest fundraising push of the year. This year, it was a huge success! Together, we exceeded our goal and raised more than $93,000 to support our mission. From social media peer-to-peer fundraisers and local events to our annual charity disc golf tournament, supporters across the globe came together to make a difference for families affected by PFIC!
PFIC Charity Open & Labor Day Party- September 1, 2025
This year, we kicked off our fundraising season with the 3rd Annual Charity Disc Golf Tournament & Labor Day Party at Redpoint BBQ in Kentucky. The 2025 event featured PDGA-sanctioned disc golf, cornhole, live music, great food, and plenty of fun for all ages. Thanks to the hard work of our incredible volunteers and the generosity of our sponsors and guests, we raised more than $20,000 to support our mission!
We are so grateful to our local Red River Gorge community for continuing to make this event a highlight of the year!
Sign up for the PFIC Network mailing list to stay in the loop about next year’s event!
Community & Peer-to-Peer Fundraising
One of the most inspiring parts of PFIC Awareness Day is seeing how our community takes action in their own unique ways through peer-to-peer fundraising. Peer-to-peer fundraising happens when individual supporters organize their own local fundraisers to benefit PFIC Network. From simply asking friends and family to donate to a cause that’s close to their heart, to hosting creative events like bake sales or trivia nights, or participating in a charity walk or runs, these personal efforts not only raise funds but also spread awareness within local communities, reaching new audiences who might never have heard of PFIC before. Social media also makes it easy to host a virtual fundraiser. In 2025, our peer-to-peer fundraisers collectively raised over $65,000 to support our mission!
Thank you to our community fundraisers!
- Gordon Scott
- Diane Andrews
- Charmaine Gravener
- Jennifer Iachetta
- The Crompton Family
- Cedar Ventura
- Tyler Bradley
- The Perez Family
- Erin Hovey
- Vanessa Ketzler
- The Tremblay Family
- Angela Rivera
- Erik Lontok
- Lee Morrow
Interested in hosting your own fundraiser?
Community Advocacy & Action
This year, we put together a new Awareness Day Action Guide and Toolkit to inspire ideas for community advocacy and provide simple, shareable resources. One of the most powerful tools included in that guide was a focus area we return to again and again: story sharing.
Stories are more than personal reflections. They are one of the most effective ways we can raise awareness and advocate for change.
Why stories matter:
- They make PFIC real and relatable to those who have never heard of it.
- They highlight symptoms, challenges, and daily realities that data alone can’t communicate.
- They reduce isolation by helping other PFIC families feel seen, validated, and connected.
- They help educate clinicians and researchers by grounding science in lived experience.
- They motivate supporters, donors, and decision-makers to take action!
A big thank you to everyone who shared their story and to our community partners who amplified those voices by sharing and reposting PFIC Awareness Day content!
Check out the photos and videos on our Facebook page to see Awareness Day messages like this one: