Just a
part of "our staff" at NORD -- they rigorously & competitively screen & select our POIS researchers & monitor their study progress & results, requiring very detailed reports for their review (we only see a public summary -- until it's published) and they also control $taged payment$ to the awardees -- based on the researchers'
performance. At each major interval/step of the research process -- from start to finish. Meticulous!
And...extremely hard for us to duplicate!NORD's Scientific and Medical Advisory Committee: Known as "MAC" --
The NORD Medical Advisory Committee ["MAC"] is comprised of physician/researchers who share their experience and expertise on behalf of patients [e.g., POISers] and families affected by rare disorders like ours.
Marshall L. Summar, MD, Chair, NORD Strategic Advisory Committee
Division Chief, Genetics and Metabolism
Margaret O’Malley Chair of Molecular Genetics
Children’s National Medical Center
Professor, Pediatrics, George Washington
University School of Medicine and Health Sciences
Frederick Askari, MD, PhD
Associate Professor, Hepatology
Division of Gastroenterology
Director, Wilson Disease Program
University of Michigan Health System
Matthias Baumgartner, Prof DrMed
Associate Professor for Metabolic Diseases
University of Zurich
Head, Division of Metabolics
Children’s Hospital Zurich
Garrett E. Bergman, MD
Senior Director, Medical Affairs
Kedrion USA
https://www.kedrion.comPreston W. Campbell, III, MD
Executive Vice President for Medical Affairs
Cystic Fibrosis Foundation
Associate Professor of Pediatrics
Johns Hopkins Cystic Fibrosis Center
Robert M. Campbell, Jr., MD
Division of Orthopaedics
Director, Center for Thoracic Insufficiency
Syndrome
Children’s Hospital of Philadelphia
Harry (Hal) Dietz, MD
Victor A. McKusick Professor of Genetics
and Medicine
Investigator, Howard Hughes Medical Institute
Johns Hopkins University School of Medicine
McKusick-Nathans Institute of Genetic Medicine
Gregory M. Enns, MD
Associate Professor of Pediatrics (Genetics)
Lucile Packard Children’s Hospital
Associate Professor – Med Center Line,
Pediatrics – Medical Genetics
Member, Child Health Research Institute
Stanford University School of Medicine
Marlene Haffner, MD, MPH
President and CEO
Haffner Associates, LLC
http://www.mhaffner.comJames E. Heubi, MD
Director, Clinical Translational Research Center
Co-Director, Center for Clinical and
Translational Science and Training
Associate Dean, Clinical and Translational
Research
Professor, Department of Pediatrics
Cincinnati Children’s Hospital Medical Center
James F. Leckman, MD
Neison Harris Professor of Child Psychiatry
Psychiatry, Psychology and Pediatrics
Yale Child Study Center
Yale School of Medicine
Brendan Lee, MD, PhD
Robert and Janice McNair Endowed Chair in
Molecular and Human Genetics
Professor of Molecular and Human Genetics
Baylor College of Medicine
Investigator, Howard Hughes Medical Institute
James E. Lock, MD
Cardiologist-in-Chief
Boston Children’s Hospital
Alexander S. Nadas Professor of Pediatrics
Harvard Medical School
Mary Jean Sawey, PhD
Senior Vice President, Medical Director
ICC LOWE Inc.
https://www.icc-hc.comSusan Winter, MD
Medical Director, Genetics and Metabolism
Children’s Hospital Central California
Doris T. Zallen, PhD
Professor of Science and Technology
Studies and Humanities
Virginia Tech University
