ARPKD/CHF Alliance is a nonprofit, public charity
dedicated solely to Autosomal Recessive Polycystic Kidney Disease (ARPKD)
and Congenital Hepatic Fibrosis (CHF).
population needs have always guided our direction. Our mission is to educate, advocate, support and
advance research specific to ARPKD/CHF. Our purpose is to
improve the lives of those affected.
The ARPKD/CHF Alliance has
created impact since establishing in 2001. We lobbied on
behalf of those affected and generated the largest research study to
date for ARPKD and CHF. Other accomplishments:
Partner with the world's leading funding agency, the National
Institutes of Health
“Clinical Investigations into ARPKD and CHF”
Fund research specific to ARPKD and CHF.
Developed Bereavement & Regional Support, Clinical Care
Guidelines, and other projects, noted below.
Provide FREE newsletters, educational materials, resources, and
Public Service Announcements, ie. “Faces
Developed database for future studies with highest patient protections.
First ARPKD/CHF Medical Symposium
the First ARPKD/CHF Conference.
Created "A VOICE" for
this disease where once there was none.
Galvanize research to
improve understanding and treatment.
Enlist patients, medical
professionals, and industry in fight against this disease.
Build greater capacity by
increasing awareness and enhancing support
through projects, programs and campaign.
Colleen B. Zak, Founding President
Mark Spier, Vice-President
Karen Willdermood, Secretary
Brian Kopan, Treasurer
Rosie Bernardo, Officer
Tristan Nicholls, Officer
Ellis D. Avner, M.D.
Director Children's Research Institute,
Children’s Hospital Health System of Wisconsin, Associate Dean for Research, Professor of Pediatrics and
Physiology, Medical College of Wisconsin
William A. Gahl, M.D., Ph.D.
Clinical Director, National Human Genome Research
Institute, Director of NORD’s Intramural Research Program
Meral Gunay-Aygun, M.D.
National Human Genome Research Institute, National Institutes
Theo Heller, M.D.
Hepatologist, Liver Disease Branch/NIDDK/National Institute Of
Helix Health, and ACireGeneTics,
Bernard S. Kaplan, M.D.
Division Chief of Nephrology, The Children’s Hospital Of
Philadelphia, Philadelphia, P.A.
Kevin E. C. Meyers, M.D.
Assistant Division Chief of Nephrology, The Children’s
Hospital of Philadelphia, Philadelphia, PA..
David A. Piccoli, M.D.
Division Chief of Pediatric Gastroenterology and Nutrition,
The Children's Hospital of Philadelphia, Philadelphia, P.A.
Sharon Terry MA
Executive Director of PXE International, Inc.,
President of the Genetic Alliance, Washington, DC
Vicky Holes Whittemore, Ph.D.
Director, Center without Walls & Advisor, Tuberous Sclerosis