PFIC Network Mission and Values
Mission: To improve the lives of patients and families worldwide affected by Progressive Familial Intrahepatic Cholestasis, PFIC.
Value Proposition: We support research programs, provide educational materials, match families for peer support, and participate in advocacy opportunities.
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 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 564 people through facebook, 189 people through instagram and 265 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 have brought 22 families together in person at our inaugural Family Conference in June, 2019. We created the official PFIC Awareness Day, 6 different Peer Support programs and the only PFIC patient self report registry. We have met and exceeded our organizations short term goals. As we move forward, we plan to further our organizations 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