Mark L. Batshaw, MD
Principal Investigator of the Urea Cycle Disorders;
Chief Academic Officer, Children's National Medical Center;
Professor and Chair, Department of Pediatrics;
Associate Dean for Academic Affairs

The George Washington University School of Medicine and Health Sciences
111 Michigan Avenue, N.W.
Washington, D.C. 20010

Peter A. Merkel, MD, MPH
Principal Investigator of the Vasculitis Clinical Research Consortium;
Associate Professor of Medicine
Section of Rheumatology and the Clinical Epidemiology Unit;
Director, Vasculitis Center

E5, Boston University School of Medicine
715 Albany Street
Boston, MA  02118

Francis Collins, MD, PhD
Director

National Human Genome Research Institute
National Institutes of Health
31 Center Drive MSC 2152
Bldg. 31, Room 4B09
Bethesda, MD 20892-2152

Mary Dunkle
Vice President of Communications

National Organization for Rare Disorders
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968

Rashmi Gopal-Srivastava, PhD
Director, Extramural Research Program

Office of Rare Diseases
National Institutes of Health
6100 Executive Blvd, Suite 3B-01
Rockville, MD  20852

Maria I. New, MD
Principal Investigator of the Rare Genetic Steroid Disorders Consortium;
Professor of Pediatrics
Director, Adrenal Steroid Disorders Program

Department of Pediatrics
Mount Sinai School of Medicine
One Gustave L. Levy Place, Box 1198
New York, NY  10029

Extramural Program, Rheumatic Diseases Branch
One Democracy Plaza
6701 Democracy Boulevard, Suite 800, MSC 4872
Bethesda, MD 20892-4872

Tan Nguyen, MD, PhD
Medical Officer

Office of Orphan Products Development
Food and Drug Administration
Parklawn Building, Room 6A55, HF-35
5600 Fishers Lane
Rockville, MD  20857

Robert C. Griggs, MD
Principal Investigator of the Consortium for Clinical Investigation of Neurologic Channelopathies;
Professor and Chair of Neurology

University of Rochester School of Medicine
601 Elmwood Avenue
Rochester, NY  14642

Thomas L. Ortel, MD, PhD
Principal Investigator of the Rare Thrombotic Disorders Consortium;
Associate Professor of Medicine (Hematology) and Pathology

Duke University Health System
Room 0563 Stead Building
Durham, NC  27710

Stephen Groft, PhD
Director

Office of Rare Diseases
6100 Executive Boulevard
Room 3B-01, MSC 7518
Bethesda, MD 20892

Kathleen Paulus, CIP
Protocol Manager
Rare Diseases Clinical Research Network

Pediatric Epidemiology Center
University of South Florida
3650 Spectrum Boulevard, Suite 100
Tampa, Fl 33612

Edward Kaye, MD
Vice President of Clinical Research

Genzyme Corporation
500 Kendall Street
Cambridge, MA  02142

Alan K. Percy, MD
Co-Principal Investigator the Angelman, Rett, Prader-Willi Syndrome Consortium;
Professor of Pediatrics, Neurology, Neurobiology, and Genetics

University of Alabama at Birmingham
1530 3RD Ave South
CIRC 320
Birmingham, AL  35294-0021

Michael R. Knowles, MD
Principal Investigator of the Genetic Disorders of Mucociliary Clearance Consortium;
Associate Director of the Cystic Fibrosis Adult Clinic and CF Research and Treatment Center

The University of North
7019 Thurston Bowles, CB#7248
Carolina School of Medicine, Chapel Hill, NC 27599-7248

Ronald J. Sokol, MD
Principal Investigator of the Cholestatic Liver Diseases Consortium;
Professor and Vice Chair of Pediatrics;
Chief, Section of Pediatric Gastroenterology, Hepatology and Nutrition

University of Colorado School of Medicine
Box B290, The Children's Hospital
1056 E 19th Ave.
Denver, Colorado 80218

Jeffrey P. Krischer, PhD
Principal Investigator of the RDCRN Data and Technology Coordinating Center;
Professor and Chief
Division of Informatics and Biostatistics;
Director, Pediatrics Epidemiology Center

University of South Florida
3650 Spectrum Boulevard, Suite 100
Tampa, Florida 33612

Bruce C. Trapnell, MD
Principal Investigator of the Rare Lung Diseases Consortium;
Professor, Departments of Medicine and Pediatrics

University of Cincinnati College of Medicine
Cincinnati Children's Research Foundation
3333 Burnet Avenue
Room 4029, TCHRF
Cincinnati, Ohio 45229-3039

Jaroslaw Maciejewski, MD, PhD
Principal Investigator of the Bone Marrow Failure Disease Consortium;
Associate Professor of Medicine Cleveland Clinic Lerner College of Medicine
Hematology Oncology and Blood Disorders;
Head, Section of Experimental Hematology and Hematopiesis

The Cleveland Clinic Taussig Cancer Center
9500 Euclid Avenue, R-40
Cleveland, OH 44195