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Community / Public Engagement

Oral Abstract Presentation Session l Health Services

Priority Needs of the US Sickle Cell Community: Insights From US Advisory Boards

Sunday, June 18, 2023
1:45 PM – 2:00 PM East Coast USA Time
Location: Grand Salon E
Live Stream

    Speaker(s)

  • André M. Harris, MSW (he/him/his)

    Executive Board Member
    Sickle Cell Association of Houston
    University of Houston
    Houston, Texas, United States

    Slides

    • First Author(s)

  • André M. Harris, MSW (he/him/his)

    Executive Board Member
    Sickle Cell Association of Houston
    University of Houston
    Houston, Texas, United States

    Slides

    • Author(s)

  • André M. Harris, MSW (he/him/his)

    Executive Board Member
    Sickle Cell Association of Houston
    University of Houston
    Houston, Texas, United States

    Slides

  • Biree Andemariam, MD

    Professor of Medicine
    New England Sickle Cell Institute, University of Connecticut Health, Farmington, CT, USA
    University of Connecticut Health
    Farmington, Connecticut, United States

  • MR

    Mia Robinson, BA

    President of the General Assembly
    Sickle Cell Community Consortium, Georgia, United States

  • RH

    Regina Hartfield, BA

    CEO and President
    Sickle Cell Disease Association of America Inc.
    Hanover, Maryland, United States

  • Adam Wufsus, PhD (he/him/his)

    Medical Director, Rare Blood Disorders
    Novo Nordisk, Inc.
    Plainsboro, New Jersey, United States

    • Corresponding Author(s)

  • Caterina Minniti, MD

    Professor Emerita of Medicine and Pediatrics
    Albert Einstein College of Medicine
    Bronx, New York, United States

    • Author(s)

  • Caterina Minniti, MD

    Professor Emerita of Medicine and Pediatrics
    Albert Einstein College of Medicine
    Bronx, New York, United States

Disclosure(s):
André M. Harris, MSW: No relevant disclosure to display
Biree Andemariam (keep), MD: No relevant disclosure to display
Adam Wufsus, PhD: No relevant disclosure to display
Caterina Minniti, MD: No relevant disclosure to display

Learning Objectives:

  • recognize the disparity in resources/funding dedicated to sickle cell disease compared to other disease states in the US
  • describe some of the top priority unmet needs of people living with sickle cell disease as identified by patient advocates and hematologists
  • reflect on ways to address/identify solutions for the unmet needs of people living with sickle cell disease