STOP THE ITCH!
PFIC.org 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 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.
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 visiting this page, you at least know that PFIC exists. Talk about it. Use #pficawareness or #stoptheitch when posting on social media and tell our story.
As this page develops, we will post awareness events and opportunites that are easy to be involved in. Every little bit helps give this disease a voice. Let's shout, "Stop the itch!"
Donate to PFIC
Want to contribute to the Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network?? Click the button above! 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. The PFIC Network is and always will be run entirely on a volunteer basis, so you know that 100% of your donation will go straight to our cause.
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? Follow this link to get connected!