Track: PWBD
Dawn Rotellini (she/her/hers)
Chief Operating Officer
National Bleeding Disorders Foundation
Gibsonia, United States
Richard Gorman, PhD (he/him/his)
Research Fellow
Department of Clinical and Experimental Medicine
Brighton and Sussex Medical School
Brighton, United Kingdom
Leonard Valentino, MD (he/him/his)
Professor
Rush University
Glenview, United States
Lize van Vulpen, MD, PhD (she/her/hers)
Internist-Hematologist, Assistant Professor
UMC Utrecht
Utrecht, Netherlands
Laurence Woollard (he/him/his)
Director
On The Pulse Consultancy
Tahira Zafar, MBBS, DCP, FRCPath
Director HTC
Hemophilia Patient Welfare Society RAWALPINDI PAKISTAN
Rawalpindi, Pakistan
People with hemophilia (PWH) exhibit variability in phenotypic (symptoms) expression of their disorder. Factor levels don’t tell the complete story. For example, why does one person with moderate hemophilia factor levels bleed more or less than another person? Why does a person with “normal” factor levels have bleeding symptoms? When using factor levels to determine access to treatment and care, we get it wrong if we don’t ask – “what are your bleeding symptoms?” Therefore, the standard classifications of hemophilia, based on factor activity can result in unpredictable clinical manifestations. Join the conversation about why phenotype (how you are bleeding) matters and the direct impact on treatment and care for all PWH.
Chair: Dawn Rotellini (she/her/hers) – National Bleeding Disorders Foundation
Speaker: Leonard A. Valentino, MD (he/him/his) – Rush University
Speaker: Laurence Woollard (he/him/his) – On The Pulse Consultancy
Speaker: Richard Gorman, PhD (he/him/his) – Brighton and Sussex Medical School
Speaker: Tahira Zafar, MBBS, DCP, FRCPath – Hemophilia Patient Welfare Society RAWALPINDI PAKISTAN
Speaker: Lize F.D van Vulpen, MD, PhD (she/her/hers) – UMC Utrecht