How You Can Take Action on PFIC Awareness Day!
October 5th is PFIC Awareness Day – a day for patients, families, clinicians, researchers, and partners around the world to come together and bring attention to PFIC!
PFIC is not one single disease, but a group of rare liver conditions – referred to as PFIC “types” – that affect 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.
By raising awareness together, we promote understanding of these conditions, challenges and barriers – and that understanding drives greater support, more research, and hope for better treatments.
How You Can Take Part
This PFIC Awareness Day, we’re asking everyone to join in a collective effort to shine a spotlight on PFIC.
Here are some ways to participate on October 5th:
- Host A Fundraiser: Organize a social media fundraiser or community event to support PFIC Network’s mission.
- Share Your Story: Post a 30-second video or a written message of support on social media and tag #pficawareness to be a part of the larger campaign!
- Not sure where to start? Try the prompt “To me, PFIC means…”
- To me, PFIC means…living with an itch that touches every part of daily life.
- To me, PFIC means…watching my child fight through challenges most people don’t see.
- To me, PFIC means…a long and difficult journey to get the right diagnosis.
- To me, PFIC means…standing beside my loved one through every step of their journey.
- To me, PFIC means…difficulty accessing treatments in my country.
- Not sure where to start? Try the prompt “To me, PFIC means…”
- Post a Photo: Share a selfie, a ribbon, or anything that shows what PFIC means to you. Use #pficawareness to be a part of the larger campaign!
- Create Artwork: Draw, paint, or design something inspired by PFIC.
- Download & Share Campaign Graphics: Use our ready-made social media graphics to show your support.
- Shine a Light: Light up a building, bridge, or even your porch in purple – the PFIC Awareness Day color!
- Think Local: Talk to your local news or community group to help PFIC stories reach a wider audience.
- Spread Knowledge: Share articles, videos, or pfic.org resources with your personal network.
- Here are some good places to start:
For Clinicians & Researchers:
Share PFIC Network’s resources with colleagues and professional societies, highlight the importance of patient-centered research, or help connect patients and families to educational materials!
For Advocacy & Industry Partners:
Amplify posts from the PFIC community, share this action guide page, or include PFIC Awareness Day in your own outreach!
For International Alliance Leaders:
The PFIC International Alliance is celebrating the global PFIC community on Awareness Day! Follow along with powerful stories from partners including #PFICItalia, #PFICPolska, and #PFICDeutschland!
Join the Conversation
To make your voice part of the global movement, use the hashtags #PFICAwarenessDay and #StrongerTogether in your posts. PFIC Network will be following along and resharing stories throughout the day, so be sure to make your posts public if you’d like them amplified!
Together, We Are Stronger
Every photo, every post, every story adds to the momentum. Together, across ages and types, roles, and across the globe, we are #StrongerTogether in raising awareness of PFIC.
PFIC Awareness Day Media Toolkit
To assist our community with any PFIC Awareness Day event or promotion we are providing materials to download and print. Download these materials to share online, pass out at a fundraiser, awareness booth, or to friends and family!
