| Promoting Quality Laboratory Testing for Rare Diseases: |
| Key to Ensuring Quality Genetic Testing |
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| May 20-21, 2004 |
| Atlanta, GA |
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| Participants and Organizing Committee |
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| Organizing Committee |
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Joe Boone, PhD, MS
Associate Director for Science
CDC / PHPPO / DLS
Atlanta, GA
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Joann Boughman, PhD
Executive Director
American Society of Human Genetics
Bethesda, MD
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Bin Chen, PhD, FACMG
Geneticist / Health Scientist
CDC / PHPPO / DLS
Atlanta, GA
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W. Andrew (Andy) Faucett, MS, CGC
ORISE Research Fellow
CDC / PHPPO / DLS
Atlanta, GA
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Carol Greene, MD
Medical Officer
HHS / Office of Science & Data Policy
Washington, DC
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Stephen C. Groft, Pharm D
Director
NIH / Office of Rare Diseases
Bethesda, MD
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David H. Ledbetter, PhD
Director, Division of Medical Genetics
Department of Human Genetics
Emory University School of Medicine
Atlanta, GA
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Michele Lloyd-Puryear, MD, PhD
Chief
Genetic Services Branch
HRSA / MCHB / DSCSHN
Rockville, MD
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Giovanna Spinella, MD
Director
Extramural Research Program
NIH / Office of Rare Diseases
Bethesda, MD
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Sharon Terry, MA
President and CEO
Genetic Alliance
Washington, DC
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Michael Watson, PhD
Executive Director
American College of Medical Genetics
Bethesda, MD
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| Participants |
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Sherri Bale, PhD
President / Clinical Director
Gene DX, Inc.
Gaithersburg, MD
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Lora J. H. Bean, PhD
Instructor / Assistant Director
Molecular Genetics Laboratory
Emory University
Atlanta, GA
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Arthur Beaudet, MD
Director
Dept. of Molecular & Human Genetics
Baylor College of Medicine
Houston, TX
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Linda A. Bradley, PhD
Geneticist
CDC / Office of Genomics and Disease Prevention
Atlanta, GA
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Michele Aviles Caggana, ScD
Section Head / Genetic Testing
NY State Health Department
Wadsworth Center
Albany, NY
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Patricia Charache, MD
Program Director
Quality Assurance & Outcomes Assessment / Pathology
Johns Hopkins Medical Institute
Baltimore, MD
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Sabrina Cheng, MD
Clinical Medical Geneticist
ATPM Fellow
CDC / NCBDDD
Atlanta, GA
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Carolyn Constantin, RNC, PhD
ORISE Research Fellow
CDC / PHPPO/ DLS
Atlanta, GA
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Sarah Cooper, MS, CGC
Genetic Counselor
Division of Medical Genetics
Emory University
Atlanta, GA
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Soma Das, PhD
Asst. Professor & Dir. Mol. Genetics Laboratory
Department of Human Genetics
University of Chicago
Chicago, IL
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Glen Drew, JD
Health Policy Analyst
Office of Human Research Protections
Rockville, MD
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Phyllis Frosst, PhD
Science Policy Analyst, Contractor
NIH / NHGRI
Bethesda, MD
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William (Bill) Gahl, MD, PhD
Clinical Director
NIH / NHGRI
Bethesda, MD
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Wayne Grody, MD, PhD
Professor
Division of Medical Genetics & Molecular Pathology
UCLA School of Medicine
Los Angeles, CA
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Devery Howerton, PhD
Chief
Lab Practice Evaluation and Genomics Branch
CDC / PHPPO / DLS
Atlanta, GA
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Lisa Kalman, PhD
ATPM Career Development Awardee
CDC / NCEH
Newborn Screening Quality Assurance Program
Atlanta, GA
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Aileen Kenneson, PhD, MS
Epidemiologist
CDC / NCBDDD
Atlanta, GA
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Muin J. Khoury, MD, PhD
Director
CDC / Office of Genomics and Disease Prevention
Atlanta, GA
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Marsha Lanes, MS
Genetic Counselor
National Organization for Rare Diseases
Danbury, CT
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Mary Lou Lindegren, MD
Medical Epidemiologist
CDC / Office of Genomics and Disease Prevention
Atlanta, GA
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Ira M. Lubin, PhD, FACMG
Geneticist
CDC / PHPPO / DLS
Atlanta, GA
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Elizabeth Mansfield, PhD
Scientific Reviewer
FDA / Division of Immunology & Hematology
Rockville, MD
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Morris B. (Moe) Mellion, MD
Associate Medical Director
Blue Cross and Blue Shield Association
Teton Village, Wyoming
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Joanne Mei, PhD
Lead Research Chemist
CDC / Newborn Screening Quality Assurance Program
Atlanta, GA
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Cynthia A. Moore, MD, PhD
Medical Geneticist
CDC / Office of Genomics and Disease Prevention
Atlanta, GA
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Myra Moran, JD
HIPAA Compliance Advisor
HHS / OCR
Atlanta, GA
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Kasinathan Muralidharan, PhD
Assistant Professor
Director Molecular Genetics Laboratory
Emory University School of Medicine
Atlanta, GA
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Roberta (Bonnie) Pagon, MD
Director
Gene Tests, University of Washington
Seattle, WA
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Margaret Piper, PhD, MPH
Senior Consultant
Technology Evaluation Center
Blue Cross and Blue Shield Association
Chicago, IL
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Sonja Rasmussen, MD, MS
Associate Director for Science
CDC / NCBDDD / DBDDD
Atlanta, GA
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Peter Ray, PhD
Head, Division of Molecular Genetics
The Hospital for Sick Children
Toronto, Canada
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Eric Schmidt, MS, PhD
Rep. for NSGC
Baylor College of Medicine
Houston, TX
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Fay Shamanski, PhD
Policy Analyst
NIH / SACGHS
Bethesda, MD
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Danilo (Dan) Tagle, PhD
Program Director
NIH / Neuroscience Center
Bethesda, MD
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Patrick Terry
Founding President
PXE International, Inc.
Washington, DC
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Santa Tumminia, PhD
Special Assistant to Director
NIH / National Eye Institute
Bethesda, MD
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Virginia Wanamaker, BS, MT(ASCP)
Deputy Director
CMS / Division of Laboratory Services
Baltimore, MD
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Janet Warrington, PhD
VP, Molecular Diagnostics R&D
Affymetrix, Inc.
Santa Clara, CA
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Janet Whitley, PhD
Pharmacologist / FDA
Rockville, MD
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Jean Amos Wilson, PhD
Scientific Director / Molecular Genetics
Specialty Laboratories
Santa Monica, CA
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Carl Yamashiro, PhD
Head of Bioassay Development
Applied NanoBiosciences Center
Arizona State University
Tempe, AZ
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| Rare Disease Conference |