About Us
The Collaboration, Education, and Test Translation (CETT) Program for Rare
Genetic Diseases was developed by the
NIH Office of Rare Diseases.
- To promote new test development for rare genetic diseases
- To facilitate the translation of genetic tests from research laboratories to clinical practice
- To establish collaborations and provide education about each rare genetic diseases; related genetic research and clinical impact of testing
- To support the collection and storage of genetic test result information in publicly accessible databases to leverage the information into new research and new treatment possibilities
Giovanna Spinella, M.D.
CETT Program Director
Andy Faucett, M.S., C.G.C.
CETT Program Coordinator
William A. Gahl, M.D., Ph.D.
CETT Program Scientific Advisor
Suzanne Hart, Ph.D.
CETT Program Scientific Advisor
Roberta Pagon, M.D.
CETT Program Review Board Coordinator
Lisa Forman, Ph.D.
National Library of Medicine’s National Center for Biotechnology Information (NCBI)
Kate Reed, M.P.H., Sc.M.
CETT Program Education Coordinator
Leslie Biesecker, M.D.
National Human Genome Research Institute, NIH
Peter Byers, M.D.
University of Washington; American Society of Human Genetics
Tina M. Cowan, Ph.D.
Stanford Biochemical Genetics Laboratory
John Hardy, Ph.D.
National Institute on Aging, NIH
Howard Levy, M.D.
Johns Hopkins University
Rosalie Lewis
Dystonia Medical Research Foundation
Leigh LoPresti, M.D
Medical College of Wisconsin
Elaine Lyon, Ph.D.
Medical Director: ARUP Molecular Pathology Laboratories
Katherine McCurdy
Barth Syndrome Foundation, Inc.
Marshall Summar, M.D.
Medical Genetics, Vanderbilt
V. Reid Sutton, M.D.
Baylor College of Medicine in Houston
Danilo Tagle, Ph.D.
National Institute of Neurological Disorders and Stroke, NIH
Tracy Trotter, M.D.
San Ramon Valley Primary Care
Vivianna Van Deerlin, M.D., Ph.D.
University of Pennsylvania Health System
Patricia Ward, M.S.
Baylor College of Medicine
Vicky Holets Whittemore, Ph.D.
Tuberous Sclerosis Alliance
Marc Williams, M.D.
Intermountain Health Care
Linda Bradley, Ph.D.
Centers for Disease Control and Prevention
David Lockwood, Ph.D.
Genzyme Corporation
Michael Rackover
Philadelphia University