PFIC Network Mission and Values
Vision:
To inspire hope for the PFIC community.
Mission:
To improve the lives of patients and families worldwide affected by Progressive Familial Intrahepatic Cholestasis, PFIC.
Value Proposition:
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 PFIC Network, Inc., a 501(c)(3) charitable organization. What began as a small team of parent volunteers has grown into an organization with dedicated staff and advocates who work alongside families and board members with deep personal ties to the PFIC community. We collaborate with physicians and researchers who specialize in the disease to identify the needs of the community and advance research. PFIC families and our team continue to be a greater voice in the rare disease space — advocating for more medical research, creating opportunities for families to connect across the world, and ensuring no one has to navigate this diagnosis alone. 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. While our organization is based in the US, our efforts extend internationally as we continue to work with families to assist in finding solutions for all members of our rare community.
Since our founding in 2018, PFIC Network has grown significantly in both reach and impact. We have built peer support and education programs, created the official PFIC Awareness Day (October 5th), expanded direct financial assistance to patients and families across multiple continents, and grown a global network of advocates and partner organizations. We have represented PFIC at major scientific and advocacy conferences and funded PFIC research through our Research Grant Program. Our patient registry has contributed to peer-reviewed research, and we have been awarded two Patient-Centered Outcomes Research Institute (PCORI) grants to advance patient-centered research in the PFIC community.
As we move forward, we will continue to expand and refine our programs in response to the evolving needs of patients, families and the broader healthcare community. We remain committed to bridging gaps in research, education and support — ensuring that no family has to navigate a PFIC diagnosis without resources, connection and hope.
Organization Information
Full Name: Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc.
Legal Name: PFIC Network, Inc.
EIN: 83-1084501
Email: info@pfic.org
Mailing Address:
PFIC Network, Inc.
PO Box 551
Stanton, KY 40380, USA