POSITION SUMMARY (Short summary of the essential purpose of the job)

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.

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

·       Identifies knowledge and resource gaps and works to co-develop and field test culturally relevant educational materials designed to support individuals living with SCD as they consider participation in clinical research activities and use of approved therapeutic agents

·       In collaboration with staff, ASH volunteers and other key community stakeholders, develops materials and strategies for the translation and dissemination of information about clinical research to improve health literacy and empower the SCD community to engage in conversations about research and participate in the decision-making process.

·       In collaboration with staff, ASH volunteers and other key community stakeholders, develop strategies and materials for the translation and dissemination of emerging research results to people living with sickle cell disease and their families to improve health literacy and empower them to engage in the care and treatment decision-making process.

·       Develop and implement a patient-centered community protocol review training program intended to facilitate the collection and incorporation of SCD community member input in the design of research studies and the development of consent, recruitment and educational materials.

·       In collaboration with staff, ASH volunteers, and other key stakeholders, facilitates focus groups and discussions with members of local and national CAB to review research protocols, recruitment materials, and identify community needs and concerns related to research

·       Conducts ongoing Community Engagement program assessment by developing and tracking key performance indicators

·       Prepares written correspondence, presentations and reports to ASH and ASH RC committees, ASH membership, foundations, industry partners, organizations, stakeholder groups, and federal government on the CTN community engagement initiative

·       Manages the national CAB and supports the sites with the development and maintenance of their local CABs

·       Attends all required staff meetings, training seminars and workshops;

·       Manages associated ASH SCD CTN committees and subcommittees by convening conference calls and/or meetings to ensure progress on the CTN patient engagement initiative;

·       Assists with formulation of the ASH SCD CTN budget as related to community engagement program needs;

·       Works with ASH and ASH RC staff to Identify opportunities and participate in the development of grant and funding proposals to support the work of the community engagement program

·       Collaborates with the ASH RC leadership team on the onging development and implementation of the community engagement program;

·       Other duties as assigned.

QUALIFICATIONS, KNOWLEDGE SKILL REQUIRED (Minimum education and experience needed to perform the job adequately)

Advanced degree in medicine/healthcare (MD, PA, NP, RN), MPH or PhD in public health
§  Minimum 7-years relevant professional work experience in public health, education, advocacy and research, preferably within underserved minority populations

§  Training and experience in health education and communication, integrated knowledge translation, and qualitative research methods

§  Experience organizing and conducting community focus groups

§  In-depth knowledge of SCD and individual/cultural/societal factors affecting individuals living with SCD.

§  Sound judgment related to handling of client/patient protected health information (PHI), only accessing, using or disclosing the minimum information necessary to perform this designated role on behalf ASH regardless of the extent of access provided.

§  Cultural humility toward marginalized and underserved populations required.

Detailed oriented, with excellent organizational and follow-through skills.
Strong project management skills, oral, and written communications skills required.
Proficiency with MS Office applications (Word, Excel, PowerPoint) and Internet skills required.
Willingness to perform administrative functions as related to coordination and implementation of programs and projects.
Some travel is required.
§  Attendance at and/or support of ASH-sponsored meetings and events outside of normal working hours is required (evenings and/or weekends).



Salary will be commensurate with experience ranging from $100,000 – $125,000 annually.

How to Apply: Please submit cover letter and resume.  If you are unable to complete this application due to a disability, contact slafontant@nonprofithr.com to ask for an accommodation or an alternative application process.



ADA SPECIFICATIONS (Physical demands that must be met in order to successfully complete the essential functions of the job.)

Requires ability to speak audibly and listen actively.

Requires ability to use computers, telephones and other office equipment.

Requires ability to sit for extended periods of time.

Require periodic out-of-town travel.


The above statements are intended to describe the general nature and level of work being performed by the individual(s) assigned to this position.  They are not intended to be an exhaustive list of all duties, responsibilities, and skills required.  Management reserves the right to modify, add, or remove duties and to assign other duties as necessary.

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