PFIC Network Mission and Values
To inspire hope for the PFIC community.
To improve the lives of patients and families worldwide affected by Progressive Familial Intrahepatic Cholestasis, PFIC.
PFIC Network values connection, education, and support to empower the community. We value building productive partnerships between patients/caregivers, researchers, clinicians, and industry to stimulate research focused on outcomes most meaningful to PFIC families. We value providing relevant information for informed decision making, inclusivity, and collaboration. We value the patient, the family, their choices and their stories. We value every part of our rare disease community.
How We Evolved
PFIC.org was founded in 2002 by a 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, built accessible genetic testing labs and has stayed up to date with the latest research.
In September 2018 pfic.org became the PFIC Network, Inc., a 501c3 charitable organization. PFIC Network is run entirely by patients and caregivers with a strong connection to families all over the world. We work together with a team of physicians who specialize in the disease to help identify the needs of the community. 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. Together, we WILL make a difference.
What We’ve Done and Where We’re Going
We have been working hard to not only understand the needs of the community, but document these needs in an effort to fill knowledge and resource gaps. Our organization is based in the US, however our efforts extend internationally as we continue to work with families in all areas of the world to assist in finding solutions for our rare community. Since our start in September, 2018, we have connected with 729 people through Facebook, 385 people through Instagram and 500 people through our newsletter. We have represented PFIC at 5 different scientific and advocacy conferences, have networked with 18 different scientific and advocacy related organizations, and brought 100+ people together virtually at our 2021 Family Conference in July 2021. Additionally, we created the official PFIC Awareness Day, multiple peer support programs and the only PFIC patient self report registry.
Thanks to the hard work of staff and volunteers, we have met and exceeded our organizations short term goals. As we move forward, we plan to further our organization’s mission by continuing to provide these programs and listening to the needs of the patient and healthcare community. We will continue to bridge the gap and create programs that will respond to the needs of the community worldwide.
Full Name: Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc.
Legal Name: PFIC Network, Inc.
PFIC Network, Inc.
PO Box 551
Stanton, KY 40380, USA