ARTICIPANT LIST - Rare disease · Laboratoire de Genetique Moleculaire et Chromosomique. Institut Universitaire de Recherche Clinique. 641 avenue du doyen G. Giraud. Montpellier,

PARTICIPANT LIST

Abla, Oussama, M.D. The Hospital for Sick Children 555 University Avenue Toronto, M5G1X8

Acosta, Maria T., M.D. Assistant Professor Department of Neurology Children's National Medical Center Research Clinician National Human Genome Research Institute National Institutes of Health 35 Convent Drive Building 35, Room 1B209 Bethesda, MD 20892

Agarwal, Rajeev K., Ph.D. Program Director Translational Research Program National Cancer Institute National Institutes of Health 6116 Executive Boulevard Building 6116, Mail Stop 8347 Rockville, MD 20852

Akers, Amy L., Ph.D. Chief Scientific Officer Angioma Alliance 6409 Fayetteville Road Suite 120-247 Durham, NC 27713

Alter, Blanche P., M.D., M.P.H. Senior Clinician Clinical Genetics Branch Division of Cancer Epidemiology and Genetics National Cancer Institute National Institutes of Health 6120 Executive Boulevard EPS 7020 Rockville, MD 20852

Alving, Barbara Office of the Director National Center for Research Resources National Institutes of Health 31 Center Drive Claude D. Pepper Building, 3B11 Bethesda, MD 20892

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The Intersection of Patient Registries, Biospecimen Repositories and Clinical Data — Contact Information

Andre, Paulo, M.D. CEO MDinteractive 48 Pondview Road Sudbury, MA 01776

Arena, J. Fernando Scientific Review Officer Epidemiology and Population Sciences Integrated

Review Group Center for Scientific Review National Institutes of Health 6701 Rockledge Drive Bethesda, MD 20817

Ashby, Ann, M.B.A. Foundation for the National Institutes of Health 9560 Rockville Pike Bethesda, MD 21663

Ashizawa, Tetsuo Professor and Chair Department of Neurology University of Florida 100 South Newell Drive L3-100 Gainesville, FL 32611

Ashlock, Melissa A., M.D. Division of Intramural Research National Human Genome Research Institute National Institutes of Health 12 South Drive 12A, 1033 Bethesda, MD 20892

Atkinson, Jane C., D.D.S. Director Center for Clinical Research National Institute of Dental and Craniofacial Research National Institutes of Health 6701 Democracy Boulevard Room 634, MSC 4878 Bethesda, MD 20892-4878

Bagal, Sukirti N., M.D. Director of Medical Affairs National Organization for Rare Disorders 55 Kenosia Avenue Danbury, CT 06813

Baird, Philip M. Vice President Kendle Government Services Secretary-Treasurer International Society for Biological and Environmental

Repositories 7361 Calhoun Place Suite 500 Rockville, MD 20855

Baldwin, Andrea M., C.R.N.P. Pediatric Nurse Practitioner Pediatric Oncology Branch National Cancer Institute National Institutes of Health 10 Center Drive 10 CRC 1-5750 Bethesda, MD 20892

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Ball, Kaelin R. Goodwill Ambassador The Sturge-Weber Foundation P.O. Box 418 Mount Freedom, NJ 07970

Ball, Karen L. President and CEO The Sturge-Weber Foundation P.O. Box 418 Mount Freedom, NJ 07970

Bartek, Ronald J. President Friedreich's Ataxia Research Alliance (FARA) P.O. Box 1537 Springfield, VA 22151

Batshaw, Mark, M.D. Chief Academic Officer Children's National Medical Center Professor and Chair Department of Pediatrics Children's National Medical Center 111 Michigan Avenue, NW Washington, DC 20010

Beara Lasic, Lada, M.D. 115 Corona Avenue Pelham, NY 10803

Beiswanger, Christine M. Assistant Director Coriell Institute for Medical Research 403 Haddon Avenue Camden, NJ 08103

Belichenko, Pavel, M.D., Ph.D. Stanford University Department of Neurology 1201 Welch Road Room P220 Stanford, CA 94305

Berenbaum, Sheri A., Ph.D. Professor of Psychology and Pediatrics The Pennsylvania State University 519 Moore Psychology, Penn State University Park, PA 16802

Beroud, Christophe, Pharm.D., Ph.D. Institut National de la Sante et de la Recherche Medicale U827

Assistant Professor Montpellier University Hospital Laboratoire de Genetique Moleculaire et

Chromosomique Institut Universitaire de Recherche Clinique 641 avenue du doyen G. Giraud Montpellier, 34093

Black, Jodi B., Ph.D. Deputy Director Division of Extramural Research Activities National Heart, Lung, and Blood Institute National Institutes of Health 6701 Rockledge Drive Room 7104 Bethesda, MD 20892

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Blaisdell, Carol, M.D. Medical Officer Lung Biology and Disease National Heart, Lung, and Blood Institute National Institutes of Health 6701 Rockledge Drive 10-042 Bethesda, MD 20892

Bledsoe, Marianna J., M.A. Deputy Associate Director Clinical Research Policy Analysis and Coordination

Program Office of Biotechnology Activities Office of the Director National Institutes of Health 6705 Rockledge Drive Rockville, MD 20892

Blumsack, Martin B. Scientific Program Specialist Division of Research Infrastructure National Center for Research Resources National Institutes of Health 6701 Democracy Boulevard Democracy One, Room 931 Bethesda, MD 20892-4874

Boerkoel, Cornelius F., M.D., Ph.D. Laboratory Director Rare Disease Foundation Associate Professor Provincial Medical Genetics Program University of British Columbia 4500 Oak Street Room C234 Vancouver, BC, Canada

Bonham, Vence L., J.D. Senior Advisor to the Director National Human Genome Research Institute National Institutes of Health Chief Education and Community Involvement Branch National Human Genome Research Institute National Institutes of Health 31 Center Drive Room B1B55 Bethesda, MD 20892

Bramer, Steven L., Ph.D. Chief Drug Development Officer National Neurovision Research Institute/Foundation

Fighting Blindness 11435 Cronhill Drive Owings Mills, MD 21117

Brauchla, Mary, M.P.H. Project Coordinator Southeast Regional Collaborative (SERC) 2165 North Decatur Road Decatur, GA 30033

Brewer, Kathy G. President ECD Global Alliance 13065 Highway 1146 DeRidder, LA 70634

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Breychak, Andrew Program Manager Center for Biomedical Informatics and Information

Technology National Cancer Institute National Institutes of Health Program Manager Sapient 2115 East Jefferson Street Suite 5029Q Rockville, MD 20852

Brower, Amy M., Ph.D. Project Manager American College of Medical Genetics Genomics Consultant Aurora Health Care 315 South Fork Place South Sioux City, NE 68776

Brown, Kyle CEO Innolyst, Inc. 180 Warren Road San Mateo, CA 94401

Burke, Kathryn A. 1208 Light Street Apartment B Baltimore, MD 21230

Butler, Thomas C. 47013 Kentwell Place Sterling, VA 20165

Cada, Mark Life Sciences Account Manager LabVantage Solutions 1160 Route 22 East Bridgewater, NJ 08807

Calhoun, Catherine, J.D. Board Member Fibrous Dysplasia Foundation McCune-Albright Syndrome/Fibrous Dysplasia Coordinator MAGIC Foundation P.O. Box 2774 Saint Francisville, LA 70775

Campbell, Susan E. Project Coordinator Brown University Center for Gerontology 121 South Main Street Box G-121-617 Providence, RI 02912

Campbell, Jean F. Vice President of Membership Development National Organization for Rare Disorders (NORD) 55 Kenosia Avenue Danbury, CT 06810

Cantilena, Cathy, M.D. Staff Physician Clinical Center National Institutes of Health Medical Director BRT Labs, Inc. 13601 Maidstone Lane Potomac, MD 20854

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Carnes-Stine, J.P. Director of IT/Medical Cystic Fibrosis Foundation 6931 Arlington Road Suite 200 Bethesda, MD 20814

Chapman, Craig Vice President of Business Development Innolyst 4 West 4th Avenue Penthouse A San Mateo, CA 94402

Christensen, Ronald A., M.D. Co-CEO Registrat-Mapi 1117 East Paradise Lane Scottsdale, AZ 85255

Cimino, James J., M.D. Chief Laboratory for Informatics Development Clinical Center National Institutes of Health 10 Center Drive Room 6-2551 Bethesda, MD 20892

Collier, Elaine, M.D. Senior Advisor to the Director Division of Clinical Research Resources National Center for Research Resources National Institutes of Health 6701 Democracy Boulevard Room 922 Bethesda, MD 20892-4874

Comi, Anne M. Director Hunter Nelson Sturge-Weber Center Kennedy Krieger Institute Associate Professor of Neurology and Pediatrics Johns Hopkins Medicine Kennedy Krieger Outpatient Building 801 North Broadway, Room 553 Baltimore, MD 21205

Comolli, Jean Craft "JC," B.S.N., M.B.A. Program Officer Division of Pharmacotherapies and Medical

Consequences of Drug Abuse National Institute on Drug Abuse National Institutes of Health Public Health Advisor National Institute on Drug Abuse National Institutes of Health 6001 Executive Boulevard Neuroscience Center, Room 4128 Bethesda, MD 20852

Compton, Carolyn C., M.D., Ph.D. Director Office of Biorepositories and Biospecimen Research National Cancer Institute National Institutes of Health Acting Director Office of Technology and Industrial Relations National Cancer Institute

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National Institutes of Health 31 Center Drive Building 31, Room 10A03 Bethesda, MD 20852

Conger, Brenda A., M.E.D. President & Executive Director CFC International 183 Brown Road Vestal, NY 13850

Conroy, Richard Program Director Division of Applied Science and Technology National Institute of Biomedical Imaging and

Bioengineering National Institutes of Health 6707 Democracy Boulevard Suite 200, Democracy II Bethesda, MD 20785

Constantin, Carolyn, Ph.D., R.N. Health Scientist Centers for Disease Control and Prevention 1600 Clifton Road MS E88 Atlanta, GA 30333

Conwit, Robin A., M.D. Office of Clinical Research National Institute of Neurological Disorders and Stroke National Institutes of Health 6001 Executive Boulevard Neuroscience Center, 2107 Rockville, MD 20852

Cook, Michael B., Ph.D. Hormonal and Reproductive Epidemiology Branch National Cancer Institute National Institutes of Health 6120 Executive Boulevard EPS 5030 Rockville, MD 20852

Coolidge, John

Coppock, Donald, Ph.D. Scientific Review Officer Special Review and Logistics Branch National Cancer Institute National Institutes of Health 6116 Executive Boulevard #7151 Rockville, MD 20852

Corbett, Keith M. Software Engineer Clozure Associates 63 Cottage Street Unit 2 Newton, MA 02464

Cradock, James C. Pharmaceutical Resources Branch National Cancer Institute National Institutes of Health 6130 Executive Boulevard Room 8152 Rockville, MD 20852

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Culp, Michelle, B.S.N., M.P.H. Director Office of Clinical Trial Operations and Management National Institute of Dental and Craniofacial Research National Institutes of Health 6701 Democracy Boulevard Room 644 Bethesda, MD 20892-4878

Dale, David C., M.D. Professor of Medicine University of Washington Health Sciences Building AA 522 Box 356422 Seattle, WA 98195

Davis, Joie, P.N.P.-B.C. Nurse Practitioner Intramural Clinical Management and Operations Branch National Institute of Allergy and Infectious Diseases National Institutes of Health 10 Center Drive Building 10, Room 11N234 Bethesda, MD 20892

Della Rocca, Maria ICF 1803 Research Boulevard Rockville, MD 20850

Denger, Brian 16 Marial Avenue Biddeford, ME 04005

Diamond, Michael

Dickherber, Tony, Ph.D. American Association for the Advancement of Science Fellow

Office of Biorepositories and Biospecimen Research National Cancer Institute National Institutes of Health 31 Center Drive Claude D. Pepper Building, 10A03 Bethesda, MD 20892

DiFronzo, Nancy, Ph.D. Program Director Division of Blood Diseases and Resources National Heart, Lung, and Blood Institute National Institutes of Health 6701 Rockledge Drive MSC 7950 Bethesda, MD 20892

DiPietro, Daniel Aceras BioMedical, LLC 1251 Avenue of the Americas 20th Floor New York, NY 10020

Djurdjinovic, Luba, M.S. Executive Director Ferre Institute Genetic Counselor Ferre Institute 124 Front Street Binghamton, NY 13905

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Dougherty, Denise, Ph.D. Senior Advisor Child Health and Quality Improvement Agency for Healthcare Research and Quality 540 Gaither Road Rockville, MD 20850

Dubman, Sue, B.A., M.A 21 Lynnes Way Tewksbury, MA 01876

Dubois, Jean-Denis CEO Ecogene-21 640, rue des Bruants Chicoutimi Quebec, G7H 0A6

Dunn, Barbara K., Ph.D., M.D. Medical Officer Division of Cancer Prevention National Cancer Institute National Institutes of Health 6130 Executive Boulevard EPN 2056 Bethesda, MD 20892

Durda, Kate M., M.S., C.G.C. Genetic Counselor/Research Coordinator University of Iowa 2182 ML Iowa City, IA 52246

Dwyer, Johanna T., D.Sc., R.D. Senior Nutrition Scientist Office of the Director Office of Dietary Supplements National Institutes of Health 6100 Executive Boulevard 3B03 Bethesda, MD 20892

Eckstein, David J., Ph.D. Senior Health Scientist Administrator Office of the Director Office of Rare Diseases Research National Institutes of Health 6100 Executive Boulevard Suite 3A-07 Rockville, MD 20852

Edwards, Brenda K., Ph.D. Surveillance Research Program National Cancer Institute National Institutes of Health 6116 Executive Boulevard Building 6116, Mail Stop 8315 Bethesda, MD 20892

Ehrenkranz Patterson, Wendy Senior Advisor Technology Transfer Center National Cancer Institute National Institutes of Health Executive Plaza South, Suite 450 6120 Executive Boulevard Rockville, MD 20852

El-Chemaly, Souheil Clinical Fellow Translational Medicine Branch

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National Heart, Lung, and Blood Institute National Institutes of Health 10 Center Drive Building 10, Room 5N307 Bethesda, MD 20892

Espinoza, Luis, Ph.D. Senior Scientist National Cancer Institute 9000 Rockville Pike Bethesda, MD 20892

Etheredge, Lynn Rapid Learning Project George Washington University 4805 DeRussey Parkway Chevy Chase, MD 20815

Fann, Yang Director Intramural IT and Bioinformatics Program National Institute of Neurological Disorders and Stroke National Institutes of Health 10 Center Drive MSC 1443 Bethesda, MD 20892

Farber, Amy, Ph.D. Founder and CEO LAM Treatment Alliance 64 Church Street 2nd Floor Cambridge, MA 02138

Farmer, Jennifer, M.S., C.G.C Executive Director Friedreich's Ataxia Research Alliance (FARA) 102 Pickering Way Suite 200 Exton, PA 19341

Faucett, Andrew, M.S., C.G.C. Assistant Professor Emory University School of Medicine CETT Program Coordinator Office of Rare Diseases Research National Institutes of Health 2165 North Decatur Road Decatur, GA 30033

Feil, Kelly H. President The Kellyn Group, LLC 7959 Bozman Neavitt Road Bozman, MD 21612

Feil, J.C. Consultant The Kellyn Group, LLC 7959 Bozman Neavitt Road Bozman, MD 21612

Ferguson, John Medical Consultant Office of Rare Diseases Research National Institutes of Health 10401 Windsor View Drive Potomac, MD 20854

Fertig, Noreen 3500 Terrace Street

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S756 BST Pittsburgh, PA 15261

Fete, Mary D., R.N., M.S.N. Director of Research National Foundation for Ectodermal Dysplasias 3402 Ridgeview Drive Columbia, MO 65203

Field, Marilyn J., Ph.D. Senior Program Officer Institute of Medicine 500 Fifth Street, NW Washington, DC 20001

Finkelstein, Dianne M., Ph.D. Director of Biostatistics Massachusetts General Hospital Professor Harvard University 50 Staniford Street Suite 560 (MGH Biostatistics) Boston, MA 02114

Finn, Symma, Ph.D. Health Scientist Office of Biotechnology Activities Office of the Director National Institutes of Health 6705 Rockledge Drive Suite 750, Room 743 Bethesda, MD 20892

Forman Neall, Lisa, Ph.D. National Center for Biotechnology Information National Library of Medicine National Institutes of Health 45 Center Drive Building 45, Natcher Center Bethesda, MD 20892

Forrest, Christopher B., M.D., Ph.D. Professor of Pediatrics Children's Hospital of Philadelphia 3400 Civic Center Boulevard Abramson Research Center Room 1335 Philadelphia, PA 19104

Fox, Michael, M.S. Project Leader Oncology Biostatistics Sidney Kimmel Cancer Center Johns Hopkins University 550 North Broadway Suite 1103 Baltimore, MD 21205

Freeman, Scott N., Ph.D. Food and Drug Administration Commissioner's Fellow Office of Orphan Product Development Food and Drug Administration 5600 Fisher's Lane 6A-39 Rockville, MD 20852

Fureman, Brandy, Ph.D. Program Director Channels, Synapses and Circuits Cluster National Institute of Neurological Disorders and Stroke

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National Institutes of Health 6001 Executive Boulevard Room 2138 Bethesda, MD 20852

Galpern, Wendy R., M.D., Ph.D. Office of Clinical Research National Institute of Neurological Disorders and Stroke National Institutes of Health 6001 Executive Boulevard #2225 Bethesda, MD 20892

Garcia, Debra L., M.P.A. Operations Director AIDS and Cancer Specimen Resource San Francisco General Hospital/University of California

San Francisco 1001 Potrero Avenue, Building 3, Room 207 San Francisco, CA 94110

Garfield, Donna K., R.N. 10111 Spinning Wheel Court Fairfax, VA 22032

Gershkowitz, Jayne C. Director Patient Advocacy and Public Policy Amicus Therapeutics Vice President of Education National Tay-Sachs and Allied Diseases Association Amicus Therapeutics 6 Cedar Brook Drive Cranbury, NJ 08512

Gillespie, Andrea, R.N., M.S. Research Nurse Pediatric Oncology Branch National Cancer Institute National Institutes of Health 10 Center Drive 10-CRC, Room 1-5750 Bethesda, MD 20892

Gilson, Marla F. Director Hadassah Washington Action Office 5100 Wisconsin Avenue, NW Suite 250 Washington, DC 20016

Glynn, Simone A., M.D., M.P.H. Branch Chief Transfusion Medicine and Cellular Therapeutics Branch Division of Blood Diseases and Resources National Heart, Lung, and Blood Institute National Institutes of Health 6701 Rockledge Drive MSC 7950 Bethesda, MD 20892

Goetz, Kerry, M.S. Program Coordinator eyeGENE Opthalmic Genetics and Visual Functions Branch National Eye Institute National Institutes of Health 10 Center Drive Room 10N226

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Bethesda, MD 20892

Goldfarb, David S., M.D. Clinical Chief Nephrology New York University Langone Medical Center Principal Investigator Cystinuria Consortium on Hereditary Causes of

Nephrolithiasis and Kidney Failure 423 East 23rd Street 111G New York, NY 10010

Goldfarb, Lev G., M.D., Ph.D. National Institute of Neurological Disorders and Stroke National Institutes of Health 5625 Fishers Lane Room 4S06 Bethesda, MD 20892-9404

Gomel, Rachel PSC Partners Representative PSC Partners Seeking a Cure 5 Barrie Way Mill Valley, CA 94941

Gopal-Srivastava, Rashmi Director Extramural Research Program Office of Rare Diseases Research National Institutes of Health 6100 Executive Boulevard Suite 3A07, Mail Stop 7518 Rockville, MD 20852

Gordon, Leslie B., M.D., Ph.D. Associate Professor of Pediatrics Research Warren Alpert Medical School of Brown University Department of Pediatrics Hasbro Children's Hospital 593 Eddy Street Providence, RI 02903

Goshman, Sarah Assistant Director Jacob's Cure 601 Purchase Street Rye, NY 10580

Graff, Joyce W., M.A. Executive Director VHL Family Alliance 2001 Beacon Street Suite 208 Boston, MA 02135

Greenberg, Benjamin M., M.D. Director Transverse Myelitis and Neuromyelitis Optica Program Assistant Professor University of Texas Southwestern 5323 Harry Hines Boulevard Mail Code 8806 Dallas, TX 75390

Greenspan, Renata B., M.D. Director Biospecimen Network Military Cancer Institute 6900 Georgia Avenue, NW

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Washington, DC 20307

Griffin, Chris Program Analyst Office of Rare Diseases Research National Institutes of Health 6100 Executive Boulevard Room 3A07 Rockville, MD 20852

Griffith, Linda M., M.D., Ph.D. Medical Officer Division of Allergy, Immunology, and Transplantation National Institute of Allergy and Infectious Diseases National Institutes of Health 6610 Rockledge Drive Room 6716 Bethesda, MD 20892

Groft, Stephen C., Pharm.D. Director Office of Rare Diseases Research National Institutes of Health 6100 Executive Boulevard Room 3A07, MSC-7518 Bethesda, MD 20892

Gupta, Nidhi, M.D. Professional Services Contractor 15719 Mahogany Circle #101 Gaithersburg, MD 20878

Hall, Dan Manager National Database for Autism Research Office of Autism Research Coordination National Institute of Mental Health National Institutes of Health 6001 Executive Boulevard NSC Room 7221 Rockville, MD 20852

Hamilton, Holli A., M.D., M.P.H. Senior Medical Officer Division of Extramural Research National Institute of Dental and Craniofacial Research National Institutes of Health 6701 Democracy Boulevard Room 638 Bethesda, MD 20892

Harris, Paul A., Ph.D. Director Office of Research Informatics Operation Vanderbilt University 2525 West End Avenue Nashville, TN 37203

Haseltine, Florence P., Ph.D., M.D. Director Center for Population Research National Institute of Child Health and Human

Development National Institutes of Health 6100 Executive Boulevard Room 8B-07 Bethesda, MD 20892

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Haverkos, Lynne M., M.D., M.P.H. Program Director Child Development and Behavior Branch National Institute of Child Health and Human

Development National Institutes of Health 6100 Executive Boulevard Suite 4B05G, Mail Stop 7510 Rockville, MD 20852

Henderson, Marianne K., M.S. Chief Office of Division Operations and Analysis Division of Cancer Epidemiology and Genetics National Cancer Institute National Institutes of Health 6120 Executive Boulevard Room 8060 Bethesda, MD 20892

Heral, Lisa, R.N., B.A. Board Member Fibrous Dysplasia Foundation Board Member WishBONE, Inc. 3185 Oswego Avenue Fort Wayne, IN 46805

Hieshetter, Janet L. Executive Director Dystonia Medical Research Foundation 1 East Wacker Drive Suite 2810 Chicago, IL 60601

Hoffman, Amy J., M.P.H. Project Manager American College of Medical Genetics 7220 Wisconsin Avenue Suite 300 Bethesda, MD 20851

Horn, Liz, Ph.D., M.B.I. Genetic Alliance 5457 Southwest Shattuck Road Portland, OR 97221

Horton, Antony R., Ph.D. Chief Scientific Officer 3 Columbus Circle Suite 433 New York, NY 10019

Hull, Sara C., Ph.D. Director National Human Genome Research Institute Bioethics

Core National Institutes of Health Faculty Department of Bioethics Clinical Center 10 Center Drive Building 10, Suite 1C118 Bethesda, MD 20892-1156

Hyatt-Knorr, Henrietta D., M.A. Director Policy and Program Planning and Analysis Office of Rare Diseases Research National Institutes of Health

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6100 Executive Boulevard Room 3A07 Rockville, MD 20852

Ivy, Edward D., M.D., M.P.H. Medical Officer Enhanced Dissemination and Utilization Branch National Heart, Lung, and Blood Institute National Institutes of Health 31 Center Drive Building 31, Room 4A-10, MSC 2480 Bethesda, MD 20892

Jackson, Laird G., M.D. Professor of Genetics Drexel University College of Medicine 245 North 15th Street Department of Obstetrics and Gynecology, MS 495 Philadelphia, PA 19102-1192

Jaffe, Deborah, Ph.D. Program Director Office of the Director National Cancer Institute National Institutes of Health 6120 Executive Boulevard Suite 300 Rockville, MD 20852

Jakowlew, Sonia, Ph.D. Cancer Training Branch National Cancer Institute National Institutes of Health 6116 Executive Boulevard Suite 700, Mail Stop 8346 Bethesda, MD 20892-8346

James, Cynthia A., Sc.M., Ph.D. Senior Research Program Coordinator Johns Hopkins Arrhythmogenic Right Ventricular

Dysplasia (ARVD) Program Genetic Counselor Johns Hopkins Hospital Carnegie 592 600 North Wolfe Street Baltimore, MD 21287

Javois, Lorette, Ph.D. Program Director Developmental Biology, Genetics, and Teratology

Branch Center for Developmental Biology and Perinatal

Medicine National Institute of Child Health and Human

Development National Institutes of Health 6100 Executive Boulevard Room 4B01D Rockville, MD 20852

Jinnah, Hyder A., M.D., Ph.D. Professor Emory University 6302 Woodruff Memorial Building 101 Woodruff Circle Atlanta, GA 30322

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John-Sowah, Joylene, M.D., M.P.H. Medical Officer Research Translation Branch National Heart, Lung, and Blood Institute National Institutes of Health 31 Center Drive South Suite 4A10 Bethesda, MD 20892

Jones, Stacie S., M.P.H. Office of the Director National Cancer Institute National Institutes of Health 900 Saigon Road McLean, VA 22102

Kaneshiro, Julie, M.A. Policy Team Leader Office for Human Research Protections 1101 Wootton Parkway Suite 200 Potomac, MD 20852

Karp, Barbara I., M.D. Chair Combined NeuroScience and National Institute on Drug

Abuse Institutional Review Boards National Institute of Neurological Disorders and Stroke National Institutes of Health 10 Center Drive Building 10, Room 6-5733 Bethesda, MD 20892

Kau, Alice, Ph.D. Program Director Mental Retardation and Developmental Disabilities

Branch National Institute of Child Health and Human

Development National Institutes of Health 6100 Executive Boulevard Suite 4B09F, Mail Stop 7510 Bethesda, MD 21044

Kaufman, Jeffrey Executive Director Adenoid Cystic Carcinoma Research Foundation P.O. Box 442 Needham, MA 02494

Kaufmann, Petra, M.D. Associate Director Office of Clinical Trials National Institute of Neurological Disorders and Stroke National Institutes of Health 6001 Executive Boulevard NSC 2216 Rockville, MD 20852

Kawar, Jennifer C. Local Representative of the Greater Washington Region Support Group

Benign Essential Blepharospasm Research Fund 7509 Nevis Road Bethesda, MD 20817

Kelly, Jack President Lymphangiomatosis and Gorham's Disease Alliance P.O. Box 970153

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Boca Raton, FL 33497-0153

Kennedy, Annie Vice President of Advocacy Muscular Dystrophy Association 1025 Connecticut Avenue Suite 907 Bethesda, MD 20814

Kim, Kelly Cancer Diagnosis Program National Cancer Institute National Institutes of Health 6130 Executive Boulevard Suite 6046, Mail Stop 7420 Rockville, MD 20852

Kim, Su Young, M.D., Ph.D. Pediatric Oncology Branch National Cancer Institute National Institutes of Health 10 Center Drive Mail Stop 1104 Bethesda, MD 20892

Kleitman, Naomi, Ph.D. Program Director National Institute of Neurological Disorders and Stroke National Institutes of Health 6001 Executive Boulevard NSC Room 2207, MSC 9525 Bethesda, MD 20892

Komatsoulis, George A., Ph.D. Deputy Director Center for Biomedical Informatics and Information

Technology (CBIIT) National Cancer Institute National Institutes of Health 2115 East Jefferson Street Suite 5000 Rockville, MD 20852

Koontz, Diane C. Project Manager University of Pittsburgh 3500 Terrace Street S726 Biomedical Science Tower Pittsburgh, PA 15261

Krasnewich, Donna, M.D., Ph.D. Division of Genetics and Developmental Biology National Institute of General Medical Sciences National Institutes of Health 45 Center Drive Building 45, Room 2AS25H Bethesda, MD 20892

Kratz, Christian P. Investigator Human Genetics Program Clinical Genetics Branch Division of Cancer Epidemiology and Genetics National Cancer Institute National Institutes of Health 6120 Executive Boulevard Room EPS 7030 Rockville, MD 20852

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Krosnick, Steven Program Director Office of the Director National Cancer Institute National Institutes of Health 6120 Executive Boulevard Executive Plaza South, 300, Mail Stop 7227 Bethesda, MD 20892

Krotoski, Danuta Office of the Director National Institute of Child Health and Human

Development National Institutes of Health 6100 Executive Boulevard 4A05B Bethesda, MD 20892-7510

Kutkat, Lora National Institutes of Health 9000 Rockville Pike Building 1, Room 260B Bethesda, MD 20892

Leader, Benjamin, M.D., Ph.D. Chief Executive Officer ReproSource, Inc. 300 Trade Center S-6540 Woburn, MA 01801

Ledbetter, David H., Ph.D. Professor Emory University Department of Human Genetics Director Division of Medical Genetics 615 Michael Street Suite 301 Atlanta, GA 30322

Lee, Janet L., M.T. Autoimmunity and Islet Section National Institute of Diabetes and Digestive and Kidney

Diseases National Institutes of Health 10 Center Drive Building 10, CRC Room 5W-5872 Bethesda, MD 20892

Lee, Albert, Ph.D. Program Director Extramural Science Programs National Institute of Biomedical Imaging and

Bioengineering National Institutes of Health 6707 Democracy Boulevard Suite 200 Bethesda, MD 20892-5477

Lewis, Matthew R. President International Cystinuria Foundation Research Associate Colorado State University 712 Great Plains Court Fort Collins, CO 80526

Liu, Xinmin Office of the Director National Institute of Mental Health

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National Institutes of Health 35 Convent Drive Porter Building, 1A208 Bethesda, MD 20892

Livnat, Daniella Division of AIDS National Institute of Allergy and Infectious Diseases National Institutes of Health 6700 B Rockledge Drive Room 5207 Bethesda, MD 20892

Love, Susan M., M.D. President Dr. Susan Love Research Foundation 2811 Wilshire Boulevard Suite 500 Santa Monica, CA 90403

Luckey, Heidi K. Bioinformatics Database Developer University of Colorado Denver 13123 East 16th Avenue B395 Aurora, CO 80045

Major, Eugene O., Ph.D. Chief Laboratory of Molecular Medicine and Neuroscience National Institute of Neurological Disorders and Stroke National Institutes of Health AIDS Coordinator Intramural Program National Institute of Neurological Disorders and Stroke National Institutes of Health 10 Center Drive Building 10, Room 3B14 Bethesda, MD 20892

Malone, Tom Children's Tumor Foundation 95 Pine Street 16th Floor New York, NY 10005

Mamounas, Laura, Ph.D. Program Director National Institute of Neurological Disorders and Stroke National Institutes of Health 6001 Executive Boulevard Neuroscience Center, 2114A Bethesda, MD 20852

Mandel, Daniel, Ph.D. Oak Ridge Institute for Science and Education Fellow Rare Disorders and Health Outcomes Team Division of Human Development and Disability Centers for Disease Control and Prevention 1600 Clifton Road, NE Mailstop E-88 Atlanta, GA 30333

Manion, Michele Executive Director PCD Foundation 10137 Portland Avenue, South Minneapolis, MN 55420

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Martin, Jodie M., M.G.C. Genetic Counselor Children's National Medical Center 111 Michigan Avenue, NW Washington, DC 20010

Matthews, Jay T. Merck & Co., Inc. University of the Sciences, Philadelphia 110 Stoneybrook Drive Ridley Park, PA 19078

McCurdy, Katherine R. Founding Board Member Barth Syndrome Foundation, Inc. 12 Carleon Avenue Larchmont, NY 10538

McDonald, Clement J., M.D. Office of the Director National Library of Medicine National Institutes of Health 8600 Rockville Pike 38A 7N707 Bethesda, MD 20894

McGlynn, Katherine A. Senior Investigator Hormonal and Reproductive Epidemiology Branch National Cancer Institute National Institutes of Health 6120 Executive Boulevard EPS-Suite 550 Rockville, MD 20852-7234

McInnes, Pamela M., D.D.S., M.Sc. Director Division of Extramural Research National Institute of Dental and Craniofacial Research National Institutes of Health 6701 Democracy Boulevard Room 610, Mail Stop 4878 Bethesda, MD 20892-4878

McNeil, Dawn E., M.D.

Meagher, Kevin Vice President Information Management Services, Inc. 12501 Prosperity Drive Suite 200 Silver Spring, MD 20904

Meyers, Catherine M., M.D. Director Office of Clinical and Regulatory Affairs National Center for Complementary and Alternative

Medicine National Institutes of Health 6707 Democracy Boulevard Two Democracy Plaza, Suite 401 Bethesda, MD 20892

Middelton, Lindsay A., R.N., C.G.C. Senior Research Nurse Urologic Oncology Branch National Cancer Institute National Institutes of Health Genetic Counselor

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Urologic Oncology Branch National Cancer Institute National Institutes of Health 9000 Rockville Pike CRC Room 2W-5740 Bethesda, MD 20892

Mikhail, Isis S., M.D., M.P.H., Dr.P.H. Director Research Development and Support Program Office of Cancer Complementary and Alternative

Medicine Division of Cancer Treatment and Diagnostics National Cancer Institute National Institutes of Health 6116 Executive Boulevard Suite 609 Bethesda, MD 20852

Miller, Catriona

Milliner, Dawn S., M.D. Staff Physician Mayo Clinic Director Rare Kidney Stone Consortium Mayo Clinic Division of Nephrology Mayo Clinic Rochester, MN 55905

Mohan, Charles A. CEO/Executive Director United Mitochondrial Disease Foundation 8085 Saltsburg Road Pittsburgh, PA 15239

Monico, Carla G. Mayo Clinic 200 First Street, SW Rochester, MN 55905

Moore, Robert B., Ph.D. Review Branch National Heart, Lung, and Blood Institute National Institutes of Health 6701 Rockledge Drive Room 7200 Bethesda, MD 20892

Moore, Helen M., Ph.D. Director Biospecimen Research Network National Cancer Institute National Institutes of Health 31 Center Drive 31/10A03 Bethesda, MD 20892

Moreno, Jonathan D., Ph.D. David and Lyn Silfen Professor University of Pennsylvania 3401 Market Street Suite 320 Philadelphia, PA 19104

Moses, Marsha A., Ph.D. Director Vascular Biology Program

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Children's Hospital Boston Julia Dyckman Andrus Professor Harvard Medical School Karp Family Research Laboratories, 12.214 300 Longwood Avenue Boston, MA 02115

Moskaluk, Christopher A., M.D., Ph.D. Associate Professor University of Virginia Director UVA Biorepository P.O. Box 800214 UVA Health System Charlottesville, VA 22908

Mudd, S. Harvey, M.D. Scientist Emeritus Office of the Director National Institute of Mental Health National Institutes of Health 10 Center Drive Building 10, Room 2D46 Bethesda, MD 20892

Nakagawa, Jo Anne Tuberous Sclerosis Alliance 801 Roeder Road Suite 750 Silver Spring, MD 20910-4487

Ndifor, Vida B. eyeGENE Opthalmic Genetics and Visual Functions Branch National Eye Institute National Institutes of Health 10 Center Drive Clinical Center, Building 10, 10N226 Bethesda, MD 20892

Nelson, Lawrence M. Section on Implantation and Oocyte Physiology National Institute of Child Health and Human

Development National Institutes of Health 10 Center Drive Hatfield Clinical Research Center, 1-3330 Bethesda, MD 20892

Nelson, Stuart J., M.D., F.A.C.M.I. Head Medical Subject Headings National Library of Medicine National Institutes of Health 8600 Rockville Pike Building 38A, Room B2E17 Bethesda, MD 20894

Nerurkar, Lata S., Ph.D. Senior Advisor to the Program Policy Office of the Director Office of Rare Diseases Research National Institutes of Health 6100 Executive Boulevard Room 3A-07, MSC 7518 Bethesda, MD 20892-7518

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Neti, Chalapathy, Ph.D., B.S. Associate Director Healthcare Transformation IBM Research P.O. Box 704 Yorktown Heights, NY 10598

Nicholson, Anna M. Clinical Research Coordinator Division of Extramural Research Activities National Institute of Arthritis and Musculoskeletal and

Skin Diseases National Institutes of Health 6701 Democracy Boulevard Suite 800 Bethesda, MD 20892

Nieman, Lynnette Senior Investigator Program in Reproductive and Adult Endocrinology National Institute of Child Health and Human

Development National Institutes of Health 10 Center Drive Building 10/CRC 1-3140 Bethesda, MD 20892

Odenkirchen, Joanne C., M.P.H. Clinical Research Project Manager Office of Clinical Research National Institute of Neurological Disorders and Stroke National Institutes of Health 6001 Executive Boulevard Room 2178, NSC, MSC 9520 Bethesda, MD 20892-9520

Odim, Jonah Clinical Transplantation Section National Institute of Allergy and Infectious Diseases National Institutes of Health 6610 Rockledge Drive Building 6610, 3041 Bethesda, MD 20892

Ojeifo, John O., M.D., Ph.D., M.B.A. Program Director Center to Reduce Cancer Health Disparities National Cancer Institute National Institutes of Health Health Scientist Administrator 6116 Executive Boulevard Rockville, MD 20785

Olivier, Kenneth N., M.D., M.P.H. Staff Clinician Laboratory of Clinical Infectious Diseases National Institute of Allergy and Infectious Diseases National Institutes of Health 9000 Rockville Pike Building 10, Room 11N234 Bethesda, MD 20892-1888

O'Rourke, P. Pearl, M.D. Director Human Research Affairs Partners HealthCare System, Inc. 116 Huntington Avenue Suite 1002 Boston, MA 02116

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Oster-Granite, Mary L., Ph.D. Health Scientist Administrator Center for Developmental Biology and Perinatal

Medicine National Institute of Child Health and Human

Development National Institutes of Health 6100 Executive Boulevard Room 4B05L, MSC 7510 Bethesda, MD 20892-7510

Ota Wang, Vivian Extramural Programs Branch National Human Genome Research Institute National Institutes of Health 5635 Fishers Lane Suite 4076 Bethesda, MD 20892

Pals, PMP PMP Pals' Network

Pass, Kenneth Senior Research Scientist Biggs Laboratory New York State Department of Health P.O. Box 509 Albany, NY 12201-0509

Pennington, Barbara J., R.N., M.S. Director Kendle Government Services 1011 Ashes Drive Wilmington, NC 28405

Petrakova, Eva, Ph.D., M.P.H. Program/Project Officer Drug Development and Clinical Sciences Branch National Institute of Allergy and Infectious Diseases National Institutes of Health 6700B Rockledge Drive Suite 5208, Mail Stop 7600 Bethesda, MD 20817

Pilon, Andre M., Ph.D. Science Education Fellow National Human Genome Research Institute National Institutes of Health 31 Center Drive Room B1B55, MSC 2070 Bethesda, MD 20892

Pitzer, Amy D. Database Administrator PheoPara Alliance 3511 Christopher Drive Kokomo, IN 46902

Polizzotto, Mark N., M.D. Staff Physician HIV/AIDS Malignancy Branch National Cancer Institute National Institutes of Health 10 Center Drive Building 10, Room 6N110 Bethesda, MD 20892

Pollen, Geraldine B., M.A. Consultant Office of the Director Office of Rare Diseases Research

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National Institutes of Health 6100 Executive Boulevard Room 3A07 Rockville, MD 20852

Porter, John D., Ph.D. Program Director National Institute of Neurological Disorders and Stroke National Institutes of Health 6001 Executive Boulevard NSC 2142 Bethesda, MD 20892

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Prust, Morgan J. Children's National Medical Center 111 Michigan Avenue, NW Department of Neurology, Floor 4 Washington, DC 20010

Pryber, Sherrie L. Clinical Immunology Branch National Institute of Allergy and Infectious Diseases National Institutes of Health 6610 Rockledge Drive Room 6115 Bethesda, MD 20892

Purucker, Mary, M.D., Ph.D. Medical Officer, Program Official Division for Clinical Research Resources National Center for Research Resources National Institutes of Health 6701 Democracy Boulevard Room 925 Bethesda, MD 20892

Qasba, Pankaj Blood Diseases Branch National Heart, Lung, and Blood Institute National Institutes of Health 6701 Rockledge Drive Suite 9030, Mail Stop 7950 Bethesda, MD 20817

Radaeva, Svetlana Division of Metabolism and Health Effects National Institute on Alcohol Abuse and Alcoholism National Institutes of Health 5635 Fishers Lane Suite 2033, Mail Stop 9304 Rockville, MD 20852

Rangel Miller, Vanessa, M.S., C.G.C. Genetic Counselor Emory University Registry Coordinator DuchenneConnect 2165 North Decatur Road Atlanta, GA 30033

Rasooly, Rebekah S. Program Director Division of Kidney, Urologic, and Hematologic Diseases National Institute of Diabetes and Digestive and Kidney

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Diseases National Institutes of Health 6707 Democracy Boulevard 2 Democracy Plaza, 643 Bethesda, MD 20892

Rhie, Julie Regulatory Affairs Branch National Cancer Institute National Institutes of Health 6130 Executive Boulevard Executive Plaza North, 7100B Rockville, MD 20852

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Ritz, Louise Clinical Research Program Manager Office of Clinical Research National Institute of Neurological Disorders and Stroke National Institutes of Health 6001 Executive Boulevard Room 2188 Rockville, MD 20852

Roberts, Amy, M.D. Children's Hospital Boston 300 Longwood Avenue Department of Cardiology, Farley 2 Boston, MA 02115

Rodgers, Richard P., M.D. Medical Officer Office of Orphan Products Development Food and Drug Administration 5600 Fishers Lane HF-35 Rockville, MD 20857

Rodrigues, Merlyn, M.D. Scientific Expert Vision Research Program National Eye Institute National Institutes of Health 5635 Fishers Lane Suite 1300 Rockville, MD 20852

Rodriguez, Luz M. Medical Officer Gastrointestinal and Other Cancers Research Group National Cancer Institute National Institutes of Health

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6130 Executive Boulevard Executive Plaza North, 2148 Rockville, MD 20852

Rodriguez, Laura L., Ph.D. Acting Director Office of Policy, Communications, and Education National Human Genome Research Institute National Institutes of Health 31 Center Drive Building 31, Room 4B09, MSC 2152 Bethesda, MD 20892

Rodriguez-Canales, Jaime, M.D. Research Fellow Laboratory of Pathology National Cancer Institute National Institutes of Health 10 Center Drive Clinical Center, B1B37 Bethesda, MD 20892

Rodriguez-Chavez, Isaac R., Ph.D. Director AIDS and Immunosuppression Program National Institute of Dental and Craniofacial Research National Institutes of Health 6701 Democracy Boulevard Room 614 Bethesda, MD 20892-4878

Rose, Lynn M., Ph.D. Director Clinical Operations Cystic Fibrosis Therapeutics Development Network Director Preclinical Research Development Network University of Washington Institute of Translational Health

Sciences 1100 Olive Way MPW-5-4 Seattle, WA 98101

Rosenbaum, Louise M., Ph.D. Science Policy Analyst Office of Science Policy and Planning National Institute of Arthritis and Musculoskeletal and

Skin Diseases National Institutes of Health 9000 Rockville Pike Building 31, Room 4C13 Bethesda, MD 20892

Rosenberg, Ellen Clinical Transplantation Section National Institute of Allergy and Infectious Diseases National Institutes of Health 6610 Rockledge Drive Building 6610, 3081 Bethesda, MD 20817

Rubinstein, Yaffa Office of the Director Office of Rare Diseases Research National Institutes of Health 6100 Executive Boulevard Executive Building, Room 3A07 Rockville, MD 20852

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Runko, Alexander, Ph.D. Program Analyst National Institute of Neurological Disorders and Stroke National Institutes of Health 6001 Executive Boulevard Neuroscience Center, Room 2208 Rockville, MD 20892-9525

Russler, Daniel C., M.D. Vice President Clinical Informatics Oracle 3215 Saybrook Drive Atlanta, GA 30319

Rutkowski, Anne M., M.D. Chairman Cure CMD P.O. Box 701 Olathe, KS 66051

Safer, Ricky W. President PSC Partners Seeking a Cure 5237 South Kenton Way Englewood, CO 80111

Safer, Donald S. Scientific/Medical Advisory Committee Member PSC Partners Seeking a Cure 5237 South Kenton Way Englewood, CO 80111

Sagel, Scott D., M.D. Associate Professor of Pediatrics University of Colorado Denver School of Medicine The Children's Hospital 13123 East 16th Avenue B395 Aurora, CO 80045

Sawyer, Sherilyn, Ph.D. Program Manager Office of Biorepositories and Biospecimen Research National Cancer Institute National Institutes of Health 31 Center Drive 10A03 Bethesda, MD 20892

Schoyer, Lisa, M.F.A. Board Member Costello Syndrome Family Network Chair Costello Syndrome Research Advisory Group 244 Taos Road Altadena, CA 91001

Schramm, Charlene Deputy Branch Chief Heart Development and Structural Diseases Branch National Heart, Lung, and Blood Institute National Institutes of Health 6701 Rockledge Drive MSC 7940 Bethesda, MD 20892-7940

Schully, Sheri D., Ph.D. Program Director Host Susceptibility Factors Branch National Cancer Institute

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National Institutes of Health 6130 Executive Boulevard #5138, MSC 7393 Bethesda, MD 20892

Schwartz, Jack, J.D. Visiting Law Professor University of Maryland School of Law 500 West Baltimore Street Baltimore, MD 21201

Seavers III, Norman Manager Research and Development Southeast Tissue Alliance 6241 Northwest 23rd Street Suite 400 Gainesville, FL 32653

Seidlin, Mindell, M.D. Consultant Seidlin Consulting LLC 580 West End Avenue New York, NY 10024

Sen, H. Nida, M.D. Clinical Immunology Section National Eye Institute National Institutes of Health 10 Center Drive 10/10N112 Bethesda, MD 20892

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Shapiro, Amy D., M.D. Medical Director Indiana Hemophilia and Thrombosis Center 8402 Harcourt Road Suite 500 Indianapolis, IN 46260

Shaw, Wallace, M.D., Ph.D. Staff Clinician Section on Childhood Neuropsychiatric Disorders National Institute of Mental Health National Institutes of Health 10 Center Drive Building 10, 3N202 Bethesda, MD 20892

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Shenkman, Elizabeth A., Ph.D. Professor University of Florida College of Medicine Chair Department of Epidemiology and Health Policy Research 1329 SW 16th Street Suite 5130 Gainesville, FL 32608

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Sherman, Mark, M.D. Hormonal and Reproductive Epidemiology Branch National Cancer Institute National Institutes of Health 6120 Executive Boulevard Executive Plaza South, 5109 Rockville, MD 20854

Sherman, Stephanie L., Ph.D. Professor Emory University Chair Research Committee Fragile X Clinical Research Consortium 615 Michael Street Whitehead 301 Atlanta, GA 30322

Sidransky, Ellen Medical Genetics Branch National Human Genome Research Institute National Institutes of Health 35 Convent Drive Porter Building, 1A213 Bethesda, MD 20892

Sieber, Beth-Anne, Ph.D. Program Officer National Institute of Neurological Disorders and Stroke National Institutes of Health 6001 Executive Boulevard Room 2223, MSC 9525 Bethesda, MD 20892-9525

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BioReliance Corporation Laboratory Director 14920 Broschart Road Rockville, MD 20852

Slutsky, Jean R., P.A., M.S.P.H. Director Center for Outcomes and Evidence 540 Gaither Road Rockville, MD 20850

Smith, Anna M. United States Military Institute 6900 Georgia Avenue, NW Building 1, A-109 Washington, DC 20307

Sommer, Josh Executive Director Chordoma Foundation P.O. Box 4562 Greensboro, NC 27404-4562

Sommer, Simone S., M.D., M.P.H. President and Cofounder Chordoma Foundation P.O. Box 4562 Greensboro, NC 27404-4562

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Stack, Nancy J. Founder, CEO Cystinosis Research Foundation 18802 Bardeen Avenue Irvine, CA 92612

Stacpoole, Peter, Ph.D., M.D. Director Clinical and Translational Science Institute University of Florida P.O. Box 100219 Gainesville, FL 32610

Stanton, Arlene, Ph.D., N.C.C. 13624 Crusader Way Germantown, MD 20874

Strange, Charlie, M.D. Professor of Pulmonary Medicine Medical University of South Carolina Director Alpha-1 Foundation Research Registry 96 Jonathan Lucas Street 812 CSB Charleston, SC 29425

Sturman, Lawrence S., M.D., Ph.D. Director Wadsworth Center New York State Department of Health Empire State Plaza Room E260 Albany, NY 12201

Subramony, S.H., M.D. Professor of Neurology McKnight Brain Institute at the University of Florida 100 South Newell Drive

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L3-100 Gainesville, FL 32611

Sullivan, Kathleen E., M.D., Ph.D. Children’s Hospital of Philadelphia United States Immunodeficiency Network Division of Allergy and Immunology 3615 Civic Center Boulevard Philadelphia, PA 19104

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Summar, Karen L., M.D. Assistant Professor of Pediatrics Cincinnati Children’s Hospital Center Director Thomas Center for Down Syndrome Cincinnati Children’s Hospital Medical Center 3333 Burnet Avenue, MLC 4002 Cincinnati, OH 45229-3039

Sutherland, Margaret, Ph.D. Program Director National Institute of Neurological Disorders and Stroke National Institutes of Health 6001 Executive Boulevard NSC 2203 Bethesda, MD 20892

Tagle, Danilo A., Ph.D. Program Director in Neurogenetics National Institute of Neurological Disorders and Stroke National Institutes of Health 6001 Executive Boulevard Neuroscience Center, Room 2114 Bethesda, MD 20895

Tartakovsky, Irena, M.D., M.S. Senior Science Policy Analyst Association of American Medical Colleges 2450 N Street, NW Washington, DC 20037

Terry, Sharon F., M.A. CEO Genetic Alliance CEO Genetic Alliance BioBank 4301 Connecticut Avenue, NW Suite 404 Washington, DC 20008

Therrell, Bradford L., Ph.D. Director National Newborn Screening and Genetics Resource

Center Professor Department of Pediatrics University of Texas Health Science Center at San

Antonio 1912 West Anderson Lane Austin, TX 78757

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Thibadeau, Judy, R.N.M.N. National Spina Bifida Program Manager Disability and Health Team Centers for Disease Control and Prevention 1600 Clifton Road MS E88 Atlanta, GA 30333

Thomas, Jeffrey A., B.S. Director of Donor Services National Disease Research Interchange 8 Penn Center, 8th Floor 1628 JFK Boulevard Philadelphia, PA 19103

Toigo, Theresa, R.Ph., M.B.A. Director Office of Special Health Issues Food and Drug Administration 5600 Fishers Lane Room 9-49 Rockville, MD 20857

Toughill, Christine Outreach Coordinator Histiocytosis Association of America 332 North Broadway Pitman, NJ 08071

Tufts, Roland L. 10 Homeplace Topsham, ME 04086

Ulisney, Karen, N.P. Deputy Program Officer Advanced Technologies and Surgery Branch National Heart, Lung, and Blood Institute National Institutes of Health 6701 Rockledge Drive Room 8204 Bethesda, MD 20892-7940

Urv, Tiina, Ph.D. Mental Retardation and Developmental Disabilities Branch

National Institute of Child Health and Human Development

National Institutes of Health 6100 Executive Boulevard Room 4B09D, MSC 7510 Bethesda, MD 20892

Vanderver, Adeline Physician Children's National Medical Center 111 Michigan Avenue, NW Washington, DC 20010

Varanasi, Arti P., Ph.D., M.P.H. Senior Study Director Westat 1500 Research Boulevard Rockville, MD 20850

Vaught, Jim B., Ph.D. Deputy Director Office of Biorepositories and Biospecimen Research National Cancer Institute National Institutes of Health 31 Center Drive Building 31, Room 10A03

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Bethesda, MD 20892

Vellucci, Linda R. 812 Danley Lane Knightdale, NC 27545

Vernon, Suzanne D., Ph.D. Scientific Director CFIDS Association of America 6827 Fairview Road Suite A Charlotte, NC 28210

Vitez, Sally F., B.S. Research Assistant Ophthalmic Genetics and Visual Function Branch National Eye Institute National Institutes of Health 10 Center Drive Room 10N226 Bethesda, MD 20892

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National Institutes of Health 6100 Executive Boulevard Suite 4B09E, Mail Stop 7510 Rockville, MD 20852

Vockley, Gerard, M.D., Ph.D. Chief Medical Genetics Children's Hospital of Pittsburgh of UPMC Professor of Human Genetics University of Pittsburgh One Children’s Hospital Drive Rangos Building, Suite 5116 4401 Penn Avenue Pittsburgh, PA 15224

Waldo, Ann, J.D. Counsel Genetic Alliance 818 Connecticut Avenue, NW Suite 1100 Washington, DC 20006

Warren, Katherine, M.D. Pediatric Oncology Branch National Cancer Institute National Institutes of Health 10 Center Drive Building 10 CRC, Room 1-3930 Bethesda, MD 20892-1104

Watson, Michael S., M.S., Ph.D. Executive Director American College of Medical Genetics Adjunct Professor of Pediatrics Washington University 7220 Wisconsin Avenue Bethesda, MD 20814

Welniak, Lisbeth, Ph.D. Program Manager Transfusion Medicine and Cellular Therapeutics Branch Division of Blood Diseases and Resources

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National Heart, Lung, and Blood Institute National Institutes of Health 6701 Rockledge Drive MSC 7950 Bethesda, MD 20892

Werner, Ellen M., Ph.D. Program Director Blood Diseases Branch National Heart, Lung, and Blood Institute National Institutes of Health 6701 Rockledge Drive MSC 7950 Bethesda, MD 20892-7950

Whitehouse, Jean Senior Director Registries and Health Outcomes Kendle 1011 Ashes Drive Wilmington, NC 28405

Whitley, Chester B., Ph.D., M.D. Professor University of Minnesota Principal Investigator Lysosomal Disease Network University of Minnesota 420 Delaware Street, SE Minneapolis, MN 55455

Whitlock, James A., M.D. Craig-Weaver Professor of Pediatrics Vanderbilt University Medical Center 2220 Pierce Avenue Pediatric Hematology/Oncology, 397 PRB Nashville, TN 37232

Whittemore, Vicky H., Ph.D. Vice President Tuberous Sclerosis Alliance Chief Scientific Officer 801 Roeder Road Suite 750 Silver Spring, MD 20910

Williams, Pamela H., J.D., Ph.D., R.N. Postdoctoral Fellow University of North Carolina Chapel Hill School of

Nursing 1600 Baity Hill Apartment 215 Chapel Hill, NC 27514

Wilson, Jerome, M.A., Ph.D. Senior Scientific Affairs Director PRA International 502 King Farm Boulevard Apartment 401 Rockville, MD 20850

Winer, Karen, M.D. Medical Officer Endocrinology, Nutrition, and Growth Branch National Institute of Child Health and Human

Development National Institutes of Health 6100 Executive Boulevard Room 4B11

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Bethesda, MD 20892-7510

Witter, James, M.D., Ph.D. Medical Officer Division of Skin and Rheumatic Diseases National Institute of Arthritis and Musculoskeletal and

Skin Diseases National Institutes of Health 6701 Democracy Boulevard Suite 800 Bethesda, MD 20892-4878

Wolfe, Lynne A., M.S., C.R.N.P. Medical Advisory Board Saving Babies Through Screening 2014 Baltimore Road Apartment H-34 Rockville, MD 20851

Wolff, Jodi M., M.S.S.W., L.S.W. Director of Clinical Services Muscular Dystrophy Association 3300 East Sunrise Drive Tucson, AZ 85718

Yamshchikov, Galina, M.S. Protocol Specialist Vaccine Research Center National Institute of Allergy and Infectious Diseases National Institutes of Health 40 Convent Drive Room 2510, MSC 3017 Bethesda, MD 20892

Yee, John, M.D., M.P.H. Vice President Global Medical Affairs Genzyme Corporation 500 Kendall Street Cambridge, MA 01142

Yinger, Colleen

Young, Allison, J.D. GC & Founding Executive The R.A.R.E. Project 3107 Waterside Lane Alexandria, VA 22309

Zahm, Shelia K., Sc.D. Deputy Director Division of Cancer Epidemiology and Genetics National Cancer Institute National Institutes of Health 6120 Executive Boulevard EPS 8074 Rockville, MD 20892-7242

Zanni, Karen L., M.S.N., F.N.P.-C., R.N. Research Scientist New York State Department of Health 42 Oakwood Street Albany, NY 12208

Zhang, Ran National Institute of Neurological Disorders and Stroke National Institutes of Health 6001 Executive Boulevard Suite 2121A, Mail Stop 9525 Rockville, MD 20852

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Zonno, Kristilyn, M.S., C.G.C. Director Genetics and Health Policy Genetic Alliance Executive Director Grand Therapeutics Foundation 4301 Connecticut Avenue, NW Suite 404 Washington, DC 20008

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