Scientific Advisory Board
A board of physicians and researchers dedicated to ARPKD/CHF advises the Alliance on science, medicine, and research priorities.
William A. Gahl, M.D., Ph.D.*
Senior Investigator, Medical Genetics Branch, NHGRI; Director of the NIH Undiagnosed Diseases Program; former Clinical Director of the National Human Genome Research Institute at the NIH; and former Director of NORD’s Intramural Research Program.
Meral Gunay-Aygun, M.D.
Professor of Pediatrics and Genetic Medicine, Johns Hopkins University School of Medicine; former Primary Investigator of “Clinical Investigations into Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis” at the National Human Genome Research Institute, National Institutes of Health.
Theo Heller, M.D.
Hepatologist; Chief of Translational Hepatology, Liver Disease Branch, National Institute of Diabetes and Digestive and Kidney Diseases, NIH; and Primary Investigator of “Natural History of Noncirrhotic Portal Hypertension.”
Eric W. Johnson, Ph.D.
Founder and CEO of Aciregenetics Consulting, Norfolk, Connecticut.
Kevin E. C. Meyers, M.D.**
Assistant Division Chief of Nephrology, The Children’s Hospital of Philadelphia; and Emeritus Professor of Pediatrics at the Perelman School of Medicine at the University of Pennsylvania.
David A. Piccoli, M.D.***
Pediatric Gastroenterology and Nutrition, The Children’s Hospital of Philadelphia; former Division Chief of Pediatric Gastroenterology and Nutrition, CHOP.
Ronald J. Sokol, M.D.
Director, Colorado Clinical and Translational Sciences Institute; Chief, Section of Pediatric Gastroenterology, Hepatology and Nutrition and the Digestive Health Institute, University of Colorado School of Medicine.
Sharon Terry, M.A.
CEO of Genetic Alliance and PXE International; co-founder of the Genetic Alliance Registry.
Dr. Wells, M.D.
Professor of Medicine and Vice-Chief for Research in the Division of Gastroenterology and Hepatology of the Perelman School of Medicine at the University of Pennsylvania.
Vicky Holets Whittemore, Ph.D.
Program Director at the National Institute of Neurological Disorders and Stroke, National Institutes of Health.
* Dr. William Gahl responded to our calls for ARPKD/CHF research, which initiated the seminal study “Clinical Investigations into Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis” at the National Human Genome Research Institute, NIH — a catalyst for future understanding and studies.
** Kevin E. C. Meyers played a pivotal role in our initial years, developing educational materials and helping to establish our website.
*** Dr. David Piccoli secured prestigious venues and prominent speakers for highly successful educational conferences, and consistently provides assistance upon request without fail.
Emeritus Status
Ellis D. Avner, M.D.
Former 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. Dr. Avner dedicated his medical career to Autosomal Recessive Polycystic Kidney Disease research and understanding.
Bernard S. Kaplan, M.D.
Former Division Chief of Nephrology, The Children’s Hospital of Philadelphia. We owe a tremendous debt of gratitude for his unwavering foundational support that allows us to continue serving our community today — we simply wouldn’t be here without him.