PFIC Awareness Day means… spotlighting the rare liver disease
Daylong Oct. 5 event aims to increase awareness, fundraising, advocacy
Supporters are gearing up for the 7th Annual PFIC Awareness Day on Oct. 5, with advocates behind the yearly event focused on improving public awareness, increasing fundraising, and better advocating for people living with the rare liver disease progressive familial intrahepatic cholestasis (PFIC).
The effort is spearheaded by the PFIC Network, which offers several ways, on its PFIC Awareness Day webpage, for individuals and groups to get involved in the cause.
“PFIC Awareness Day is the highlight of the year for our organization,” Walter Perez, president of the PFIC Network, said on the event page. “As we come together as a community to support those who itch, we will plant seeds that will leave an impact for years to come.”
PFIC encompasses a group of rare genetic liver diseases characterized by intrahepatic cholestasis, in which the flow of the digestive fluid bile out of the liver is slowed or stalled. The disease, which usually manifests during infancy or childhood, can cause progressive liver damage or liver failure, and symptoms such as debilitating itch, or pruritus.
In announcing the 2025 campaign, the PFIC Network’s webpage stated: “Every year we recognize, share, and support the PFIC community in hopes for a better future for those we love.”
For anyone wishing to participate in this year’s awareness day efforts, the PFIC Network is offering an action guide and toolkit, which includes ready-made social media graphics,
Prompt for this year’s awareness day is ‘To me, PFIC means…’
Individuals affected by PFIC are asked to post a 30-second video or a written message of support on social media. Participants are encouraged to think of the prompt “To me, PFIC means ….”
As an example, the organization suggests that a patient could write something like: “To me, PFIC means… living with an itch that touches every part of daily life.” A caregiver could perhaps write a post saying: “To me, PFIC means… watching my child fight through challenges most people don’t see.”
Participants can also share a selfie, an awareness ribbon, a piece of artwork, or anything else that shows what PFIC means to them. Supporters also are encouraged to post information and educational resources to help the community learn more about the rare liver condition.
To maximize the impact, posts should use the hashtags #pficawareness, #PFICAwarenessDay, and #StrongerTogether. The PFIC Network will follow and reshare stories that are made public.
Individuals are also encouraged to talk to local news outlets or community groups to help their awareness efforts reach a wider audience.
For the event, landmarks will be lit up purple — the PFIC Awareness Day color. Advocates can light up their own homes or arrange for a local landmark to be lit up in honor of the initiative.
We take a rare topic, a rare cause and a rare disease and make it known. … We go from doing life on our own to doing life in community.
Fundraising is also a key aspect of PFIC Awareness Day. This year, the PFIC Network has set a goal of $65,000, with more than $40,000 already raised. A fundraising toolkit is available to help individuals set up their own fundraising initiatives, or supporters can donate to any existing campaigns.
Supporters also can keep up with Awareness Day updates from the PFIC Network by following its social media pages and the stories posted to its Newsroom. They can also follow stories from international partners in the PFIC International Alliance — such as #PFICItalia, #PFICPolska, and #PFICDeutschland — on social media.
October is National Liver Awareness Month
The PFIC Network believes any advocacy day can have a profound impact, starting within its own community.
“We take a rare topic, a rare cause and a rare disease and make it known,” Perez said in the event page. “We go from doing life on our own to doing life in community.”
PFIC Awareness Day falls during National Liver Awareness Month, which is recognized annually in October. That initiative aims to raise public awareness about liver health and disease.
Liver Cancer Awareness Month is also held each October, with advocates seeking ways to educate the public and prevent the disease.
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