About Us

Mission and Vision Statement

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.

 

Who We Are and Where We Came From

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, built accessible genetic testing labs and has stayed up to date with the latest research in PFIC.

In September 2018 pfic.org became the PFIC Network, Inc., a 501c3 charitable organization. PFIC Network is run entirely by PFIC patients and caregivers with a strong connection to families all over the world. We work together with a team of physicians who specialize in PFIC to help identify the needs of the PFIC 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.

Meet Our Team

Board of Directors

Melanie Karakaidos
President, Co-Founder

PFIC Mother and Advocate

Tara Kearns
Vice President, Co-Founder

PFIC Mother and Advocate

Lisa Crompton
Treasurer

PFIC Mother and Advocate

Hayley Watts
Secretary

PFIC Supporter

Walter Perez
Director

PFIC Father and Advocate

Our Staff

Emily Ventura

Executive Director, Co-Founder

PFIC Mother and Advocate

Medical Advisory Board

Richard Thompson, MD
King’s College, London

Professor of Molecular Hepatology
Honerary Consultant Paediatric Hepatologist

Laura Bull, Ph.D.
Professor, UCSF

UCSF Liver Center Laboratory
San Francisco General Hospital
University of California San Fransisco

James E Heubi, M.D.
Cincinnati Children’s Hospital Medical Center

Associate Dean for Clinical and Translational Research
Professor of Pediatrics at University of Cincinnati Medical Center

Benjamin L. Shneider, MD
Texas Childrens Hospital, Baylor College of Medicine

George Peterkin Endowed Chair
Professor of Pediatrics and Head of Section, Pediatric Gastroenterology, Hepatology and Nutrition
Baylor College of Medicine
Chief of Service, Pediatric Gastroenterology, Hepatology and Nutrition
Texas Children’s Hospital

Ronald J. Sokol, MD, FAASLD
Childrens Hospital Colorado

Arnold Silverman MD Endowed Chair in Digestive Health
Professor and Vice Chair of Pediatrics
Director, Colorado Clinical and Translational Sciences Institute
Assistant Vice Chancellor for Clinical and Translational Science, Univ. of Colorado Denver
Chief, Section of Pediatric Gastroenterology, Hepatology and Nutrition and the Digestive Health Institute
University of Colorado School of Medicine
Children’s Hospital Colorado

James E Squires MD, MS
Director, Pediatric Transplant Hepatology Fellowship

Program
Division of Gastroenterology, Hepatology and Nutrition
Children’s Hospital of Pittsburgh

Patient and Parent Advisory Board

  • Emily Knakmuhs
  • Erin Burke Hovey
  • Alexandra Perez
  • Charmaine Gravener
  • Laura Soe Jakobsen
  • Randi Rering

What We’ve Done and Where We’re Going

We have been working hard to not only understand needs of the PFIC 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 PFIC community worldwide.