About PFIC Network
PFIC Network was formed to be a catalyst, bringing people together to inspire hope in the PFIC community. This is a rare disease, and we know from first-hand experience that patients and families need advocates who can surround them with care, equip them with information and instill hope. That’s what we’re all about.
We exist to improve the lives of patients and families worldwide affected by Progressive Familial Intrahepatic Cholestasis (PFIC) and related diseases.
A Network of Doers Getting Things Done
We value connection, education, and support to empower our community. We build productive partnerships between patients, caregivers, researchers, clinicians and industry to stimulate research. We distribute relevant information helping people make informed decisions. We value every part of our rare disease community.
Our Background
PFIC.org was created in 2002 by a mom who wanted to know all she could know about her daughter’s disease. Then in 2018, we became the PFIC Network, a nonprofit charitable organization. We have grown from an all-volunteer group of PFIC parents to a small but dedicated team of PFIC advocates. In addition, we are fortunate to have a great team of PFIC specialists to advise us.
Our Future
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. Together, we WILL make a difference.
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Full Name: Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc.
Legal Name: PFIC Network, Inc.