Preliminary Agenda

Welcoming Remarks
Susan B. Shurin, M.D., Acting Director, National Heart, Lung, and
   Blood Institute
Donald A.B. Lindberg, M.D., Director, National Library of Medicine

Session I: Sickle Cell Disease in Historical Perspective

James B. Herrick and his Contributions
Alan N. Schechter, M.D., National Institute of Diabetes and Digestive
   and Kidney Diseases

Panel Discussion: Historical and Cultural Perspectives
Moderator: John Ruffin, Ph.D., Director
                 National Center on Minority Health and Health Disparities

This panel discussion would be preceded by brief comments by each participant and the moderated conversation will cover James B. Herrick and his contributions as well as social and cultural perspectives on the history of sickle cell disease and its relationship to modern science and medicine.

Sickle Cell Anemia and the Vexed Crossroads of Race and
    Disease in America
Stephen Pemberton, Ph.D., New Jersey Institute of Technology

Sickle Cell Patients Are ______? How the Science of Treatment
    Has Shaped What Medical Professionals Think About Their
    Patients
Carolyn Rouse, Ph.D., Princeton University

Cultural Histories of Mild Sickle Cell Anemia in Senegal,
    West Africa
Duana Fullwiley, Ph.D., Harvard University

Questions and Answers

Lunch (on your own)

Experiences of People With Sickle Cell Disease Seeking Health
   Care for Pain
Mary Catherine Beach, M.D., M.P.H., Johns Hopkins University

Panel Discussion: Personal Perspectives
Moderator: Lanetta B. Jordan, M.D., M.P.H., M.S.P.H., Chief Medical
                  Officer, Sickle Cell Disease Association of America, Inc.,
                  and Memorial Healthcare System, Hollywood, FL

Screening Student Athletes for Sickle Cell Trait: Where Do We Go
   From Here?
Vence L. Bonham, Jr., J.D., National Human Genome Research
   Institute

Living Life Like It’s Golden
J. Hoxi Jones, Texas Health and Human Services Commission

To Screen or not To Screen? That Is the Question!
Robert F. Murray, Jr., M.D., Howard University School of Medicine

Reflections
Wanda Whitten-Shurney, M.D., Wayne State University/Children’s
    Hospital of Michigan

Session II: International Perspectives
Moderator: Roger I. Glass, M.D., Ph.D., Director
                 John E. Fogarty International Center for Advanced Study
                    in Health Disparities

Sickle Cell Disease in Africa: History and Disease Burden
Kwaku Ohene-Frempong, M.D., University of Pennsylvania School of
   Medicine/Children’s Hospital of Philadelphia

Sickle Cell Disease: The Contribution From Africa in the Next 100
   Years
Julie Makani, M.D., MRCP, Muhimbili University of Health and Allied
   Sciences (Tanzania)

The Caribbean Contribution to Sickle Cell Disease
Graham R. Serjeant, M.D., FRCP, Sickle Cell Trust (Jamaica)

Sickle Cell Disease in the United Kingdom: Epidemiology, Clinical
    Aspects and Morbid Anatomy
Sebastian Lucas, M.D., FRCP, FRCPath, King's College London School
   of Medicine (United Kingdom)

Questions and Answers

Adjourn

Tours of the National Library of Medicine Exhibits and Rare Book
    Collection (Building 38)

Dinner: Tragara Ristorante. We are sorry, but currently we are at capacity and can no longer take registrations or payments for the Networking Dinner.

Introduction:
W. Keith Hoots, M.D., National Heart, Lung, and Blood Institute

Sickle Cell Disease: An Historic Perspective
H. Franklin Bunn, M.D., Brigham and Women’s Hospital/Harvard
   Medical School

Keynote Speech:
Sickle Cell Anemia and the Origins of Molecular Medicine
Sir David Weatherall, M.D., FRCP, FRS, University of Oxford
   (United Kingdom)

Welcoming Remarks
Susan B. Shurin, M.D., Acting Director, National Heart, Lung, and
   Blood Institute
Sonja L. Banks, President and Chief Operating Officer, Sickle Cell
   Disease Association of America, Inc.

The NHLBI Sickle Cell Guidelines: A First Look
Barbara Yawn, M.D., M.Sc., University of Minnesota
George Buchanan, M.D., University of Texas Southwestern Medical
    Center at Dallas

Sickle Cell Anemia: Past, Present, and Future
David G. Nathan, M.D., Dana-Farber Cancer Institute

Accelerating the Therapeutic Agenda for the First Molecular
   Disease
Francis S. Collins, M.D., Ph.D., Director, National Institutes of Health

Session III: Sickle Cell Disease Pathophysiology
Moderator: Eric D. Green, M.D., Ph.D., Director
                 National Human Genome Research Institute

Sickle Cell Anemia: 100 Years later
Griffin P. Rodgers, M.D., M.A.C.P., National Institute of
   Diabetes and Digestive and Kidney Diseases

Evolving Concepts of Brain Vasculopathy and Stroke in Sickle Cell
   Disease
Robert J. Adams, M.D., Medical University of South Carolina

Genetic Contributions to Pain
Clifford Woolf, MB, B.Ch., Ph.D., Children’s Hospital
   Boston/Massachusetts General Hospital

Lung Disease and Sickle Cell Disease
Elliott Vichinsky, M.D., Children’s Hospital & Research Center
    Oakland

Genetic Modifying Factors in Sickle Cell Disease
Swee Lay Thein, FRCPath., FRCP, D.Sc., F.Med.Sci., King’s
   College London (United Kingdom)

Break

Session IV: Clinical and Social Impact Across the Lifespan
Moderator: Alan Guttmacher, M.D., Director
                 Eunice Kennedy Shriver National Institute of Child Health
                    and Human Development

Sickle Cell Disease: Maternal/Fetal/Neonatal Prospective
John C. Morrison, M.D., University of Mississippi Medical Center

The Triumphs and Challenges of the Study of Sickle Cell Disease
    in Infants, Children and Adolescents
Michael R. DeBaun, M.D., M.P.H., Vanderbilt School of Medicine

Improving the Lives of Adults With Sickle Cell Disease
Sophie Lanzkron, M.D., Johns Hopkins School of Medicine

Are You Listening to Me? Challenges in Sickle Cell Patient-
   Provider Communication
Carlton Haywood, Jr., Ph.D., M.A., Johns Hopkins University School of
   Medicine

Lunch (on your own)

Voices of Patients Video
Introduction: Wally R. Smith, M.D., Virginia Commonwealth University

Session V: Sickle Cell Disease Treatment
Moderator: Walter J. Koroshetz, M.D., Deputy Director
                 National Institute of Neurological Disorders and Stroke

Hematopoietic Stem Cell Transplantation for the Treatment of
   Adults With Sickle Cell Disease
John F. Tisdale, M.D., National Heart, Lung, and Blood Institute

Hydroxyurea for Sickle Cell Disease: Fact, Fiction, and Fantasy
Russell E. Ware, M.D., Ph.D., St. Jude Children's Research Hospital

From Mechanisms of Sickle Pathophysiology to Novel Therapies
Punam Malik, M.D., Cincinnati Children's Hospital Medical Center

Break

Session VI: Molecular Studies
Moderator: Griffin P. Rodgers, M.D., Director
                  National Institute of Diabetes and Digestive and                   Kidney Diseases

Transcription Factor Networks and Long Range Interactions
Frank Grosveld, Ph.D., Erasmus MC
   (The Netherlands)

Control of Hemoglobin Switching and HbF Silencing
Stuart H. Orkin, M.D., Harvard Medical School/Dana-Farber Cancer
   Institute

Inflammation and the Genetically Influenced Systems Biology of
   Sickle Disease
Robert P. Hebbel, M.D., University of Minnesota

Session VII: Future Prospects
Moderator: Stephen C. Groft, Pharm.D., Director
                 Office of Rare Diseases Research

Gene Transfer To Increase Fetal Hemoglobin Production
Arthur W. Nienhuis, M.D., St. Jude Children's Research Hospital

Induced Pluripotent Stem (iPS) Cells and Gene Replacement
    Therapy for Sickle Cell Disease
Tim M. Townes, Ph.D., University of Alabama at Birmingham

Concluding Remarks
Susan B. Shurin, M.D., National Heart, Lung, and Blood Institute

Adjournment