Progressive Familial Intrahepatic Cholestasis (PFIC) is a rare genetic disorder that is estimated to affect 1 in 50,000 to 100,000 people worldwide. PFIC causes progressive liver disease, which typically leads to liver failure. (Source: United States National Library of Medicine. https://ghr.nlm.nih.gov/condition/progressive-familial-intrahepatic-cholestasis#statistics)
The disease typically manifests itself in the first year of life, and may present with jaundice, irritability, growth failure, diarrhea, bleeding disorders, and/or enlarged liver. The hallmark feature of this disorder is severe debilitating pruritus (itching). (Source: PFIC.org. http://pfic.org/pficpamphletedit.pdf)
In June 2017, an amazing group of women (and mother's of PFIC kids) decided to band together and rally around a website, PFIC.org. 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. Together, PFIC 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.
With your contribution, fees for domains, website maintenance, applications for licensing and processing, and other organizational start up costs can be covered and the vision for PFIC will become reality.
Thank you for making a difference in the lives of PFIC families!