{"id":55276,"date":"2026-07-22T23:09:35","date_gmt":"2026-07-22T21:09:35","guid":{"rendered":"https:\/\/www.ipsen.com\/us\/?p=55276"},"modified":"2026-07-23T16:20:20","modified_gmt":"2026-07-23T14:20:20","slug":"pfic-colors-making-sense-of-pfic-with-the-pfic-network","status":"publish","type":"post","link":"https:\/\/www.ipsen.com\/us\/rare-diseases\/pfic-colors-making-sense-of-pfic-with-the-pfic-network\/","title":{"rendered":"PFIC Colors: Making Sense of PFIC with the PFIC Network"},"content":{"rendered":"

Progressive Familial Intrahepatic Cholestasis (PFIC) can be a complex condition. Finding trusted information about PFIC shouldn\u2019t be. PFIC Colors is designed to help families make sense of these conditions and find the information and support they need, fast.<\/em><\/p>\n\n

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Progressive familial intrahepatic cholestasis (PFIC) is a group of rare inherited liver conditions that can affect people in different ways.1,2<\/sup> Symptoms, how the disease progresses and the treatments needed can all vary depending on the different types of PFIC.1<\/sup><\/p>\n <\/div>\n\n \n \n <\/div>\n <\/div>\n <\/section>\n\n\n

This complexity means PFIC can be difficult for families to understand, especially in the early stages after diagnosis. Families facing a PFIC diagnosis often describe the early days as overwhelming, confusing, and isolating. The condition\u2019s complexity and variable presentation from person to person can make it difficult for families to understand and find information that reflects their lived experience.<\/p>\n\n

It can be a lonely and confusing time, filled with questions and uncertainty. In these moments, having access to trustworthy, community-developed resources can help bring clarity and light to what may otherwise feel like a daunting situation. This is exactly what families can find on the\u00a0PFIC Network website<\/strong><\/a>.<\/strong><\/a> PFIC Network is an independent organization.<\/p>\n\n

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\n Understanding PFIC through color <\/h3>\n <\/div>\n \n \n
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To help people navigate their way to factual, accurate and supportive information, Ipsen has joined with PFIC Network to develop an engaging and positive campaign that reaches out through digital channels, including social media, to find people who are searching for information on PFIC. Engagement is encouraged with the content using the positive, inspiring and simple concept of talking about PFIC as a disease of many colors.<\/p>\n

This color\u2011inspired initiative is designed to help make sense of PFIC\u2019s complexity by guiding families to the full spectrum of resources available on the PFIC Network website. It aims to highlight clearer, more accessible information and meaningful connection with a community that understands their lived experience.<\/p>\n <\/div>\n\n \n \n <\/div>\n <\/div>\n <\/section>\n\n\n

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\n The importance of clarity, connection and community <\/h3>\n

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Emily Ventura, co-founder and executive director of PFIC Network and mother to Cedar, who lives with PFIC, has experienced firsthand how challenging the early stages of diagnosis can be.<\/p>\n

Emily shares more about this initiative in the video below, reflecting on why bringing clarity, connection and community to PFIC families is so important.<\/p>\n <\/p>\n <\/div>\n\n \n

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