What is the PFIC Network? was founded in 2002 by a PFIC mom who wanted to know all she could know about her daughter's disease. She envisioned a place that people could visit when they needed information, hope and understanding. Through her dedication and commitment, she has helped connect families with providers, build accessible genetic testing labs and has stayed up to date with the latest research in PFIC. 

In June 2017, our founder reached out and asked for help. That is when an amazing group of women (and mother's of PFIC kids) decided to band together and rally around They shared a passion to keep the website running and to continue the work of many years of dedication and advocacy. They saw the need to keep the passing on of much needed information and to provide a place for families to connect.

While initial intentions were to run a website, in the very first conversation it became clear there is much more work to be done for PFIC, including outreach, advocacy, and research.  In order to meet these needs, this same group of women decided to create a non-profit organization for PFIC and maintain a website. Thus, the Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network (PFIC Network) was born.  

Together, PFIC families can become a greater voice in the rare disease community, advocating for more medical research, and creating opportunities to help families connect across the world and receive the support they need. The PFIC Network exists to facilitate and encourage that growth. We WILL make a difference.

Donate to PFIC Network

Want to contribute to the Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network?? Click the button above! With your contribution we can continue to grow our organization and develop the much needed voice of our community. We have lots of programs in our plan for the future including another family conference, a new website and a formal peer support network. Each contribution furthers our cause and ability to move forward with providing these invaluable resources for the PFIC community.

Thank you for making a difference in the lives of PFIC families!

Join the Community

Are you a patient or family member of someone affected by PFIC? Would you like information on resources or opportunities? Join our newsletter! We will distribute a quarterly update on what has been going on in the organization. We will also send out new information and opportunities as they become available.

If you would like to volunteer your time to either help build our organization, join a committee, become a patient advocate or spread disease awareness please take our short survey and someone will connect with you!

Spread Awareness

PFIC is among the rarest of the rare. And though it may be rare, it is FIERCE. The best thing that we can do to help PFIC kids at this time is to make ourselves known. Spread awareness! If you are a family who would like to share your story, send us an email and ask us how!

Whether or not you are someone who has a story to share, talk about us! Let people know that our patients are fierce. Use #pficawareness or #stoptheitch when posting on social media and tell the PFIC story!