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The Senior Manager, Sickle Cell Disease (SCD) Community Engagement assists in the implementation and management of patient engagement activities related to sickle cell disease for ASH Research Collaborative and the SCD Clinical Trials Network (CTN). By bringing the community voice to the table in discussions about SCD Clinical Research and engaging early and often throughout the research process, the mission of the ASH RC Community Engagement program is to ensure we are assessing the priorities of the community, gain community input to identify and address barriers to research participation, promote knowledge and co-create educational resources with the community to address concerns and questions about research and disseminate information about research outcomes to the SCD community.
Under the direction of the Director, Sickle Cell Disease Clinical Trials Network, the manager is responsible for the day-to-day management of SCD community focused projects and programs and provides input towards the overall strategy for patient engagement across ASH RC and ASH Sickle Cell programs. The Senior Manager will coordinate activities for the local site-specific Community Advisory Boards (CAB), and the ASH National CAB.
A FEW ESSENTIAL DUTIES AND RESPONSIBILITIES (Duties that occupy a major portion of time and importance in the job)
- Works with ASH RC staff, ASH members, volunteers, and stakeholders to implement and advance ASH RC’s SCD community engagement program within the context of ASH RC strategic priorities
- Develops strategies for engaging and building coalition and fostering positive and collaborative relationships with community stakeholders including those living with sickle cell disease, their caregivers, and SCD community-based organizations
- Identifies and cultivates strategic partnerships with relevant SCD patient groups, nonprofit organizations, and relevant businesses and government organizations to ensure key successes in ASH RC SCD community engagement efforts
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